As an addendum to my previous thread "Got Heart Transplant?" I'd like to respond to those who replied to that thread, and thank you once again for your response, comments, and prayers.
I was hospitalized again for five days in early April for a continuous fever/chills/shivering. The cardiologists on my transplant team at Tampa General (TGH)were very worried about a possible infection, so I was under observation pending blood cultures. Fortunately, I did not develop any kind of bacterial infection, which in the heart is almost always lights out, see ya, baby. So it was something viral, not the flu, but one of those unexplained things. To my great relief, the cardiologist decided to wean me off the Milrinone IV that had been pumping straight into my heart for the previous six weeks. The port in my chest was considered a highway (their term) for infections. After two days of reducing, then stopping, the infusions, they were very happy that the oral heart meds I was takingkept me at the level where I did not need the infusions. Praise the Lord for that, because wearing that pump for six weeks 24/7, changing the bag out every day, and having a home care nurse weekly to change the Hickman dressing, was getting bothersome. I can now take a real shower without having to saran-wrap, duct tape, and all other combinations we tried on my chest to keep it dry. What a pain, and never really came up with a combo that was effective for more than a minute or two.
My team at TGH started me on a recently (about 18n months) approved heart med here (but used effectively for about 15 years in Europe) called Entresto. This drug works well with what I have been taking, been doing it for two days now, and seems to be working well. It is designed to help strengthen badly failing hearts like mine (congestive heart failure), so the next month of blood work will determine something about my future. The DR's are very pleased, and for now any transplant has been put on the back burner. I like that idea.
Part of the philosophy of the team at TGH, and their preference (and mine) is that a transplant can be avoided. Amen to that. If I can get my heart from about 10-15% ejection fraction (60% is generally considered maximum output, 10-15 is dangerously low, thus TGH)) to about 20 - 25%, which is what these drugs are designed to do, I should be able to maintain a steady blood flow, enough for most normal activities that do not demand exertion.
http://www.mayoclinic.org/ejection-fraction/expert-answers/faq-20058286
So I am happy about that for now, hoping and praying to avoid the traumatic experience of such a drastic procedure, and all the drugs and problems that will surely entail, and appreciate your thoughts and comments. It is good to know that the experts in this field feel the same way.
I was hospitalized again for five days in early April for a continuous fever/chills/shivering. The cardiologists on my transplant team at Tampa General (TGH)were very worried about a possible infection, so I was under observation pending blood cultures. Fortunately, I did not develop any kind of bacterial infection, which in the heart is almost always lights out, see ya, baby. So it was something viral, not the flu, but one of those unexplained things. To my great relief, the cardiologist decided to wean me off the Milrinone IV that had been pumping straight into my heart for the previous six weeks. The port in my chest was considered a highway (their term) for infections. After two days of reducing, then stopping, the infusions, they were very happy that the oral heart meds I was takingkept me at the level where I did not need the infusions. Praise the Lord for that, because wearing that pump for six weeks 24/7, changing the bag out every day, and having a home care nurse weekly to change the Hickman dressing, was getting bothersome. I can now take a real shower without having to saran-wrap, duct tape, and all other combinations we tried on my chest to keep it dry. What a pain, and never really came up with a combo that was effective for more than a minute or two.
My team at TGH started me on a recently (about 18n months) approved heart med here (but used effectively for about 15 years in Europe) called Entresto. This drug works well with what I have been taking, been doing it for two days now, and seems to be working well. It is designed to help strengthen badly failing hearts like mine (congestive heart failure), so the next month of blood work will determine something about my future. The DR's are very pleased, and for now any transplant has been put on the back burner. I like that idea.
Part of the philosophy of the team at TGH, and their preference (and mine) is that a transplant can be avoided. Amen to that. If I can get my heart from about 10-15% ejection fraction (60% is generally considered maximum output, 10-15 is dangerously low, thus TGH)) to about 20 - 25%, which is what these drugs are designed to do, I should be able to maintain a steady blood flow, enough for most normal activities that do not demand exertion.
http://www.mayoclinic.org/ejection-fraction/expert-answers/faq-20058286
So I am happy about that for now, hoping and praying to avoid the traumatic experience of such a drastic procedure, and all the drugs and problems that will surely entail, and appreciate your thoughts and comments. It is good to know that the experts in this field feel the same way.
but I don't mind at all. I did the usual stupid things as a younger man. but I never smoked, only a light drinker for the most part, so the only other reasonable cause, according to my cardiologists, is something viral got hold of my heart sometime in the past. They still have no idea what the virus could be, or where it came from. That is a universal medical conundrum to this day. My CHF was diagnosed about six years ago, and for some reason my heart really enlarged about two years ago. That's when the problems started, at least what I noticed, with the hospitalization and installing of the defib/pacemaker, putting me where I am today. They have no idea what causes that. Just luck of the draw. My dad, his dad, and his dad died of heart attacks, but as far as I know there is no history of CHF with my dad or his dad. I never met my great grand father, and never really knew my grandfather (he died when I was 2).
