IV Milrinone is used as a short term treatment for heart failure. Not all those listed for transplant are placed on this but my son was in serious heart failure by the time he was and so IV Milrinone was started. It was explained that it would help him feel better and help keep him stable while he waited for the call. You can go home on IV Milrinone and for the most part continue with normal activity, health permitting.
My son was just in grade school and already had a central line for Flolan, so adding another line and pump for Milrinone sounded overwhelming. We were told he would be able to return to school but we were skeptical. However, we were well trained by the time he left the hospital and found the perfect camel backpack to hold his Flolan pump in one section and his Milrinone in the other. We also had a home nurse come in at least once a week to make sure all was going well. Our son adjusted to his new normal and returned to school. A year later he received his heart and double lung transplant.
Milrinone won’t be a part of everyone’s transplant story but should it find it’s way into yours, I hope my son’s experience gives you some encouragement. Has IV Milrinone been discussed with you or are your currently on it? It might help others to hear your story as well.
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