Milrinone is working so far…

Wanted to update everyone:

My blood pressure has stabilized in fact in a normal person it might be considered slightly high, this is great no more dizzy spells from low bp.  Unfortunately they had to stop all my other meds (except switched me to turosemide from furosemide in hopes to get my edema under control...it's not gone but better).  Dropping the meds meant stopping the ivabradine which was keeping me in the high 90s as of late for RHR but now without it im back between 105-115.  You win some you lose some.  If I disappear know I am thinking about you all I am just having more bad days than good so not hoping on as often.  Transplant eval still set for Tuesday.  Morphine was d/c yesterday so I am feeling extra crappy.  It had been helping with my breathing and circulation and of course my post op pain.  I know that will pass and better to be off it than stuck on it, just a pain to have to stop taking something that was helping a bit with my symptoms or at least making me care less lmao.  Please don't panic though if I disappear now and then, I am overwhelmed and having a hard time keeping up on things.  At the latest I will update you after next weeks evaluation.  Thanks for all the thoughts and prayers!  I'm going to go sulk and maybe sloppy cry a bit now lmao.

4 Comments

Milrinone

by Julros - 2021-06-06 13:44:23

Thank you for posting. I am sure that many like me, are thinking about you and wishing you healing thoughts. Morphine definitely can help with breathing, but of course, the long terms effects are so awful. Go ahead and have yourself a sloppy cry or two. But also, try to remember what you have accomplished so far, and your transplant is in sight. 

A big hug from me

by Gemita - 2021-06-06 17:24:39

Dear ASully,

Thank you so much for the update.  We are getting lots of information from you about managing heart failure.  I hadn’t heard of Torasemide (also known as Torsemide) before you mentioned it.  From what I have read, Torsemide may be more effective for heart failure patients than Furosemide with greater bioavailability, a longer half-life, and higher potency.  In addition, there is a suggestion that Torsemide has a vasodilatory effect and a possible anti-aldosterone effect that may contribute to its efficacy.

I am so glad your blood pressure has normalised.  I hope that means you are no longer feeling so cold.  I wonder if your higher heart rate is helping to keep your blood pressure up, although the downside of course is the tachycardia that you could well do without.

It is strange you should mention morphine helps with your breathing and with circulation.  For both of us it slows down circulation and tends to depress breathing.  In fact my husband was advised to avoid morphine, to try Nefopam instead.  But morphine makes me temporarily happy and pain free so I can imagine how you are feeling without it.

Good luck ASully for Tuesday’s transplant evaluation.  I hope you will be a perfect candidate and that you will get a new heart soon.  I will try not to worry if you go quiet and just tell myself that you need to conserve your energy.  I will write to you privately anyway and let you have our news.  Please take care, keep your strength and spirits up, have that cry whenever you need to and release all that tension and remember we are always here when you need us.

Gemita xx

All gonna be better soon

by Tulp - 2021-06-06 22:19:45

Hi Asully

Thanks for the update. We will all be thinking of you Tuesday, I know I will.

Let  your emotional waste go,, and cry, releasing the tension and fears and putting it all behind you.

Tulp

 

Thinking Of You

by Marybird - 2021-06-07 17:58:46

Just thinking of you and wishing you the very best. I admire your courage and your wit, it's a tough road to travel, being so sick and so young. As others have said, having a good sloppy cry, or however you'd want to express and let go of the sorrow, anger, frustration you feel as a perfectly natural reaction to your illness is a good way to send it all packing, or at least disperse it some.

As always, prayers, positive energies, warm fuzzies heading your way and will be thinking of you tomorrow.

Mary

 

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