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Jack W. Recipient

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

Nine years ago today, Prof Phil Spratt and the wonderful, dedicated Heart team from St. Vincent's Hospital in Sydney (Australia) inserted my Heartware LVAD and consequently extended my life another 9 years to date. I have been very fortunate to have used this time wisely and to the maximum with travelling via caravan each year for approximately 2-4  months at a time to places such as Tasmania, Queensland and exploring NSW a bit more. My wife and I have also joined a few cruises to Tasmania, Victoria and South Australia, the latest being a Christmas Cruise(2019-2020) for 2 weeks aboard the Holland America Liner 'Maasdam'. There is still just so much to see and be involved with in Australia, even during this COVID period.

Most importantly however, is the care and support given to myself and my wife at St.Vincent's Hospital. We have a marvellous LVAD Co-ordinator Desiree Robson, along with Prof Peter MacDonald, Prof Chris Hayward and other wonderful doctors. Of special note, Prof Anne Keogh, my cardiologist for over 10 years, has been a lifesaver, as she is the one who suggested I would benefit from an LVAD (destination surgery at the age of 75).  When I was given a couple of months to live (from another hospital), Prof Anne Keogh took me on as a challenge and the rest is history, still enjoying life (sailing, etc. in our 30ft yacht).

 

 

 

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Mercedes S.

I'm so glad to hear about you. Brings me some courage.  I'm about to set a date for surgery this Thursday.  I was doing good and then I crashed.  On melatonin.  It's a big step. 

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Lisa W.

So nice to hear the longevity you’ve had with your LVAD.   It will be a year in December that my husband got his LVAD.  He wants a heart transplant so bad.   Any words of encouragement if this doesn’t happen for him?

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In reply to by Lisa W.

Juanita P.

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..  
 

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In reply to by Juanita P.

William W.

Hey Juanita

I’m with you I have had the device for just five months and have been totally over it since week five. I was on the heart transplant list but took myself off since I just couldn’t wrap my head around it after having the Lvad implanted. I do wish that I had never consented to the surgery and just left when the time came. Pacemaker defibrillator that constantly pokes me in the side and the lvad that I hear a humming tone all day and night. Longer life is not Living if you can’t maintain what you were doing before.

William

 

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Dick T.

Very encouraging to hear. Dec 4th will be my one year anniversary. Had a few complications the first six months (GI bleeds, driveline infection) but have now settled into a routine. Destination therapy for me. Not qualified for transplant due to age (72). 

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In reply to by Dick T.

Pete A.

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 

 

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In reply to by Pete A.

Jack W.

Good to hear from you Pete and I totally agree with you re driveline maintenance. I have never ever had a driveline infection and this appears to be a rare situation! 
We are all going to celebrate on the 20th October this year when 10 years will be up for my HeartWare LVAD 😀

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In reply to by Pete A.

ron l.

Mr. Ayre,
Greetings. I’ve noticed all your inventions and patents. Are you developing a fully implantable LVAD and what are your thoughts about the prospects of one. Thank you again….rl

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In reply to by Jack W.

ron l.

Mr. W.,

I am approaching 75 and I’m intrigued and fascinated by your story. With all due respect may I ask you how long did it take for you to get your strength back?  How are you doing nowadays and how’s your energy level? Thank you sir…..rl

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In reply to by ron l.

Jack W.

Hi Ron,

It didn’t take me very long at all to get my strength back. After a couple of weeks in hospital, I was able to climb a flight of stairs without any trouble at all and from then I just improved more. As I’m now 85 yrs, I’m slowing down, but I still like sailing whenever possible. I still exercise but mainly at home now because of Covid 19. In the summertime, it’s great to walk along the beach which is not far away from us (Bilgola Beach).

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Reiss T.

Jack, your story is amazing and inspiring, thank you for sharing. I have just published my story, called "Not an Ordinary Life", in which ny Heartmate II plays a significant part. Its available on Amazon at: https://www.amazon.com/dp/0972226958 in case anyone is interested. The book would have not been written except for my LVAD.

Reiss Tatum.

Author, Entrepreneur, Combat Marine

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In reply to by Reiss T.

Jack W.

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

 

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In reply to by Reiss T.

Juanita P.

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.  

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linda w.

I am interested in your book and would like more information as I am working on a book as well. 

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Dale L.

They are pushing an lead on my husband.  He used to be active riding motorcycle,  working construction around the house. Now he is getting worse but is more scared of the device than dying. Could he do anything active? He is not a golfer. We love to camp primitive but I know that's out. We've tried to find people like us who love the out doors and all I get is golfers. Anyone here who could help answer?

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In reply to by Dale L.

Diane B.

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.

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In reply to by Diane B.

ron l.

Hi. When you say his shortness of breathe is what it was 15 years ago does that mean he’s not experiencing any ? On a scale of 1-10 how was it before and after he received the lvad ? Thank you for your reply….ron l..

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In reply to by ron l.

Diane B.

Sorry Ron. I just saw you questions. To clarify just prior to OR he was gasping for air. At night was the worst. It will be a year on 26th and since  he went home (after 90 days in hospital due to double pneumonia) he has never looked back. No shortness of breath at all unless he overexerts himself and that appears to be due to reconditioning. Hope that helps. Of course everyone is different.

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Lori C.

So we got the vaccine! We were ready to stop instacart and actually go food shopping!  But today they are saying even vaccinated people should wear masks.   Now I’m wondering if it’s safe enough for LVAD people to go 

what do you think?  Do you feel it’s too risky now?

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.

 

 

 

 

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ron l.

I’m not familiar with the platform regarding where to begin a new topic, but since it appears that there’s a lot of traffic on this one, here goes. While researching I came across a device being developed that is worth sharing, supported by some top Cardiologists.


“The results of this study are remarkable and demonstrate that this small, mini-invasive TET system is functional and compatible with FDA guidelines and current regulations,” said professor Michael Acker, M.D., head of the Cardiac Surgery at the University of Pennsylvania Medical Center and FineHeart scientific advisory board member. “The ICOMS technology’s unique ability to replicate the volumetric displacement of the blood, beat by beat, by generating physiological cardiac flows addresses a significant unmet clinical need and could improve the quality of life for a huge population suffering from severe heart failure today and tomorrow.”

“Once clinically proven, this can be a potentially disruptive step forward in the treatment of advanced heart failure,” said Harvard Medical School Professor Mandeep R. Mehra, MD, the William Harvey Distinguished Chair in Cardiovascular Medicine at Brigham and Women’s Hospital, Boston, and FineHeart scientific advisory board member.

This technology has been in development for many years and one day hopefully a reality, just as heart transplantation and the LVAD, continuously evolving. In vivo trials were successful and in human trials are scheduled for mid 2022. 

The website is:  www.fineheart.fr

Google:  FineHeart breaks new ground with successful removal of the ICOMS FLOWMAKER® in a 90-day in-vivo trial

All the best….

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Sharon M.

It has been 1 week since my husband underwent surgery (27/9/2021) at St Vincent's to get an LVAD implanted. He was very positive before the surgery but now after the surgery he seems to be less motivated. He does not want to talk to anyone.  Is this a normal feeling after surgery? Is this due to the medication? Thanks