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

I’m following, as my husband is in the same situation as yours. Wishing you both luck. 

Lisa, i’m so glad your husband has made a year I know how hard it can be. It’s been almost 5 years for me and I still despise the device. Even though I live a very active very active life it is still very very restrictive as well. I’m not a candidate for a heart transplant if I was I probably would not go that route. The first hospital I was with played games the second one not able to desensitize I have 99% antibodies they’re also just maintaining Coumadin and INR levels.  Personally I’ve had enough of all of it.. I don’t know how many of you in here have a biventricular pacer along with your LVAD, another pain. It has been five years since I’ve had the biventricular implanted and the battery needs to be changed already in September I’m scheduled. I’ve had enough of doctors I’ve had enough of their ridiculous continuous recidivism of appointments and then just making calls to refill a blood thinner. I am on a baby dose again I advise a baby dose heart strengthener the rest are vitamins. I question whether this device should have been implanted. Enough said!!!   I wish everyone well I know how hard it is to be hooked up to batteries in a line at night to sleep on one side or maybe two.  I’m totally over it!  Someday, however that machine carved into the heart will go bad, just like everything else.  The total implant they have been talking about, that I’m aware for almost 5 years.  Ok, over that too..  
 

That there are hospitals that transplant into the 70’s. But some choose the LVAD. All the best.

All the best with your LVAD and looking forward to hearing about how everything is working out for you as you enjoy your life.

Hi I've been developing LVADs for over 20 years,  The team at St Vincent's hospital Sydney are excellent ( from comments above) 

The most important thing is manage and take care of your driveline in regards to infection and cable  integrity as per the  hospitals instruction. Good routines are the  best action.

Report any significant changes in the  way you feel to your VAD coordinator, as  they can check the  settings for pulsatility and flow rate are appropriate. 

Pete Ayre, Cardiobionic, Sydney Australia 

That’s possible! Only 4yrs 8mths to go!!

So pleased that you were able to write your story Reiss and Lynette and I will look forward to reading it. I’m sure it will be very interesting. I now have only 4 months and 9 days before reaching 10 years with my LVAD HeartWare.

Kind Regards,

Jack

Hello Reiss, No I totally agree nothing ordinary about the LVAD.  However, there are many diff. cases of why an LVAD, etc.  Meaning, in some cases it should have never gotten to that point of an LVAD implant.  My story is "my story."  Your book has to be good because living with an LVAD is one of the hardest things I've ever done.  

Frisbee golf.

There are leagues bringing up all over the country of people playing disc golf it's just essentially an excuse to get you out to walk around and move your arms throwin the frisbee

It does not look like anyone replied to you so just a couple of suggestions if you have not already made up your minds.  Ask your LVAD doctor or coordinator if they can recommend an actual recipient who you can meet who has remained very active afterwards. It certainly is a lifestyle change with the dressing changes and the need to have land power to charge the batteries but if you are creative and not too far off the beaten path it could be doable. Not sure how you define primitive camping? If that means a tent maybe you could take a generator with you or have a vehicle that has an AC plug in it to charge batteries. If it is a Heartmate3 the batteries can last up to 17 hours. Maybe you could stay at a hotel/motel nearby and still go out during the day to fish or hunt or hike. There is a Dude Ranch near Kissimmee Florida that has accomadations that are separate tents but have power and bathroom extra with your own golf cart to get around to the different activities. It is part of the Westgate group. My husband had his LVAD 11 months ago and has had an amazing recovery. He does not golf because of a bad back but he is driving and getting around town within the limitations imposed by COVID. His energy level and shortness of breathe are what they were 15 years ago. If you read some of the other posts on this site you will see people travel and go back to work and adjust to the new normal like we are all doing right now with Covid.  Good luck with your decision. We wish you the best.

Yes, should be fine!  Covid is Covid… I got my shots but your LVAD coordinators and Drs get Paid big dollars to do their job!  This is a question and recommendation from them…Shame on them for not providing updated information on what you should and should not do concerning the Covid.