9 years today (20th Oct 2020) living with LVAD

Hello Diane,  Not another down period, been down....thank you for that assessment, lol.   And I'm sorry I don't have that much POWER to persuade an individual to choose the device or not.  If a person is on the fence, that is what family, physicians, psychologist of the team are for!!  Thanks for giving me that strength but need to be honest , I don't sugar coat anything.   I'm just stating the facts. Or better yet with all we deal with concerning LVADS, let me have a party in lieu of my hospitalization and 14 units of blood in December of 2021.  Released New Years Eve day.  Wow, what happened to Christmas.  Because of pandemic, weren't allowed to have visitors, hmmm and the floor was COVERED COVERED WITH COVID PATIENTS.  I'm not going to sit here and listen to bells and whistles when we all know that is not the case it is a HUGEEEEEEEEEEEEEEEEEE CHANGE.  And as far as a second opinion, DONE THAT.  If your area has more than 3 hospitals for LVADS, "beautiful" but in this area there are three.  Already experienced 2.  Already spoke to other Dr's about a change in the present med.  Unfortunately, the physician is a pretty boy and was more interested in spending time in the hospital than seeing his patients on clinic day.  Already spoke to administration...:) so did my homework.  And, I might add, I have every right to be angry.  If it upsets you or someone else that I'm not "sugarcoating this" I'm sorry won't get that from me.  This device took my life away, and all the medical issues that come with it.  As I read all the responses, I see 80 percent POSITIVE, maybe 85.  MY 5 PERCENT OUT OF 100 WON'T MATTER.  The question is, am I being honest?  I can only say yes.  My only concern is blaming an individual for decisions someone will or will not make, too much power given Diane.  Please divert that to God.  thank you..  

No not saying Biventricular and pacing!!! Its actually ICD biventricular pacer, not just a regular pacer, has the defib in too.  It is a little larger.   And YES, when it was implanted on November 4, 2016, I was told that the EF would improve.  It did not, 2 and /1/2 months later 2/16/2017, i nearly died.  Therefore, after 5 doctors on the ICD/Biventricular, they were all wrong. I did speak to the Dr's prior to my decision.  This is not a FIGHT OF WITS Diane.    All said the EF would improve, IT DID NOT.  Lucky me.   I'm sorry I'm not as happy as most in here.  I verbalize the truth or at least things that have been told by the medical profession and my own experience.  I think it is also very UNFAIR to blame an LVAD client/consumer/patient how ever you wish to label me, the cause of someone making or not making a HUGE decision in their life.  I have every right to express what I'm feeling as long as I'm not offensive to others, etc.  Which I'm not.  I express the truth of my experience.  And sad again, or down again??? Wow your really opinionated.  Or, def. in the medical field on behalf of the facilities.   Obviously you don't have an LVAD.  To assume my honesty and experience as insignificant and a detriment to those making a decision is also sad on your part and very judgemental.   I would say Diane, going off this site, as most don't really want to hear the truth, or the truth in the eyes of those going through this experience.  I'm not the person to talk to.  You can sugarcoat until the cows come home.  I will not sugarcoat anything.  But what I would have and have is empathy.  As I said before, I have a right to be angry, and it is no one's place to suggest I act otherwise because they believe I should or a detriment to others.  Now thats out of boundary and very judgemental.  As far as the COUMADIN...i WAS INFORMED by the medical profession, My Doctor we use that drug because it was the only one used in trial with the Heartmate 2.  I have a HEARTMATE 2.  So I guess they lied to me.  I will find out.  Cheers to all of you.  And bi-ventricular caused my heart to get worse?? No who knows, but it certainly didn't get better as all projected.  I am unhappy with the team and believe me, made phone calls for a second look.  However, as I mentioned here in this area very limited resource and they all work together.  You go to one, they still team meetings with the other.  Its called shared care.  They are doing that now, but instead of seeing your Dr. every 6 months, you see the both facilities every 3 months.  so that would be times 2 in six months, compared to one time in 6 months.   But the only convenience is one hospital is closer.  I'm not going any further with this, but I do believe in the healing from God...That is where my attention and faith will remain.  He is the master and thats where i'm going to remain in believing him.   And in response to painting a NEGATIVE PICTURE, I can only paint what is on or in my canvas.  The true colors.  Just wondering did you actually do the quantitative/qualitative research?  To advise 95 percent of the cases are happy?  What do you have to support that finding??  

Cheers to all of you!! Juanita.   

Thanks Diane, you gave her some great advice. 

Deborah C., I am sorry about your husband. My surgery was done as an emergency to save my life. I didn't have a choice. From articles I have read, there are so many people needing heart transplants, the need can't be met. The lvad has been improved so much over the years that surgeons feel it is better than a heart transplant. No rejection meds are needed with an lvad. I'm not saying its perfect for every one but it is a good solution to people that dont qualify for a h transplant.

I also understand the money situation you talked about.....not going into that here. ;-)