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Brendan B. Friend

How has your life changed since receiving an LVAD?

Hello!

I am a student at the University of Washington in an engineering class project hoping to improve the life for people with LVADs. We have been working on this project for a couple of months, and discussed with VAD coordinators, cardiologists, and industry professionals in healthcare. I would like to better understand the perspective of people who live with an LVAD, so my team can develop design solutions for unmet needs.

A question I have if you are comfortable sharing is: What did you have to sacrifice or give up ever since having an LVAD? 

Thank you so much! 

- Brendan :-) 

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Faiza A.

Your research results will be highly biased as you are working with the people who are either promoting the device or are alive and doing well. I can assure you that the physicians will not introduce you to a single case of a horrible outcome. Which is actually dramatically frequent. 
HM 3 can cause horrible never ending pain, the post operative care is poor in most hospitals. The US system has open ICUs leading to massive life loss due to incompetency of the surgeons proving medical care post operatives. 
There are no videos or pictures of people screaming in pain due to HM3. But that’s happening, and there is no visibility to it. Chest circumference is not even considered a factor on so many of the implants. 
I would recommend adding hospice nurses, to your research so that you can at least get a better picture of the negative outcomes. 
To give you perspective, the current pandemic has a fatality rate of about 2-3% and is literally changing how we live. Lvad death rate is 30% within the first year, and is still pushed as a life saving option.
Unfortunately, an informed research is not likely to create a rosy picture of this so called medical advance in engineering. 

 

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In reply to by Faiza A.

Brendan B.

Thank you for your response! I informed my team on this, and we feel this is a valuable point of view that is often neglected in medicine. I completely agree that results can be biased if not called out, so I am glad you shared this! 

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Reiss T.

I am eighty years old. In September I passed the ten year anniversary of my Heartmate II at Shands/UFHealth in Gainesville, FL. So far I have had no serious or life threatening complications since my implant. In fact three years ago I had sepsis from a "routine" colonoscopy that led to contraction a para-influenza infection and acute respiratory distress syndrome which was almost fatal. I was intubated for almost a month and hospitalized for over 2 1/2 months, during which time the VAD continued to work like a charm. Had I been on immunosuppressants with transplant I doubtfully would have survived.  

Yes, having an LVAD is cumbersome and a daily challenge but for me has been very manageable. The skill of the surgical team performing the implant may have been the main reason for my successful outcome (so far). My wife has also been an excellent caregiver and support. Credit also to my VAD team who I see every six months but talk to as needed. My mobility is somewhat limited these days due to arthritis and shortness of breath but I generally feel, eat and sleep well. 

In truth I am frustrated by the lack of availability to access outcome data that must exist somewhere, especially the lack of information about "best practices" that could be shared to promote more long term survival.  I am aware of a number of bad outcomes and do not know to what extent I may be an anomaly. What I do know is that I have been given an additional ten years of life thanks to my Heartmate II.  Any study done that will increase the percentage of good outcomes could be valuable. I would like to see a comparative scoring system for all US based implant centers and for what associative factors exist for long term qualtiy of life survival.

 

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Larry B.

I’m 70 and have lived with heart failure for the last 27 yrs. I had a five way bypass surgery in April of 1993. Did very well with that until Oct 2016 when it finally caught up with me. Got to 5he point I couldn’t walk 10 yds with stopping to rest and get my breath back. By this time I had already been on the transplant list for nine years. But, after numerous right heart caths it was determined the pressure in my heart was too high and a transplant would never be successful. I was offered a chance to enter a trial of the Heartmate 3 LVAD. Was planted in Oct 2016and released ten days later. Within 4 months I was back to playing golf twice a week, washing the cars, mowing the yard, etc, etc, etc.

It has truly been a blessing. My only complaint is that I cannot get in a swimming pool or 5he ocean ever again. Would be nice if they could water proof our equipment. But, then they would have to figure out how to keep our drive line wound sealed also. Since neither of those things are probably never gonna happen in my lifetime I don’t dwell on it. I also don’t dwell on or complain about day to day life living with my LVAD. The operative word being “living”. There are far too many worse things that may have happened.  I’m grateful. My family is grateful. Life is too short to deal with a bunch of negativity. I’ve had four more great years with my family 

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Ann G.

Had a very difficult recovery 

almost 3 yrs ago.

last yr had about six months of “ normal “ life

now suffering through low hemoglobin and blood transfusions

wonderful LVAD team

but it has been hard on me and my wife