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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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In reply to by Mercedes S.

Juanita P.

Mercedes, that is absolutely wonderful that an individual gets nine (9) additional years of life with the LVAD.  Unfortunately, that is not the case with percentage of implantation.   I wish you nothing but a very good outcome and hopefully more than nine (9) years.  Hang in there.  

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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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In reply to by William W.

Juanita P.

Absolutely William...the hospital that initially did the transplant workup and LVAD implant cost my insurance nearly a million dollars, to say in 10 months and all the pain I went through, your not a candidate antibodies 99%...they knew that from day one!!!! My question for them, that they could not answer, was why did you start in the first place??  By the way this was Temple University Hospital, PA.  The experts with heart and lung transplants.  Right.. No response.  I can tell you it had to do with the $$$ sign.  And they certainly made that.  The ball initially dropped was with Dr's here locally, they turned their heads with my ability to compensate with an 5-10 EF and work like nothing going on.  Forget the test, its all in my head.  I should have sued when I could have, unfortunately been over 2 years and things just move.  They advised when they put the biventricular in 2 1/2 months prior to my "near death" and then LVAD that the EF would improve.  This was from five (5) second opinions.   Well it didn't, it seemed to make things worse.  I remember my heart Dr. telling me that was all in my head, psychological when couldn't breath...WOW.  Buyer beware!!   Biventricular placed in ll/04/16 and near death 2/16/17.  You do the math.  Sorry to say there are a lot of medical mistakes in the grave today.  Who ever is out there, do your homework, research, ask questions, etc.  The medical field will tell you anything.  Even though they are in business to help,  "ITS STILL A BUSINESS" and they have to stay afloat.  I was just recently in hospital December 21 for GI bleed.  LVAD and blood thinners will produce that puppy.  Never, never had problem with stomach or bleed, but I did.  Thank you Coumadin/LVAD.  So to narrow it all down do your homework, if you don't mind carrying 8.5lbs of weight surgically attached, go for it, if you don't mind all the other things, Dr. visits copays, blood thinners, etc. go for it.  if you don't mind never swimming again, taking a bath, etc. go for it.  If you don't mind a tube sticking out of your stomach go for it.  If your married already well not as bad, but try to find an average person, they don't want nothing to do with LVADs.  LVAD what??? This is the life and I have to be honest.  I hate it after 5.5 years.  I hate it.  Enough said!! They will sugarcoat all the above mentioned.  Also, if you want any carry cases, backpacks, ladies handbags, you will pay for them yourself, if you can find someone to work with you.  If not, its that beautiful "BLACK" BAG you carry your batteries in.  I just had a nice conversation with corporate on this matter that sells the supplies.  They don't care about what you carrying your equipment in, just carrying it.  ha... 

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In reply to by Juanita P.

Diane B.

Hi Juanita

I see you are having another down period and you are no happier than the last time you and I conversed on this site. I really do feel sorry for you being in this situation, but I also feel extremely upset about your very negative responses to others who may be caught on the fence trying to decide what to do. Your comments may cause some one to say no because you paint a very negative picture of a post LVAD life. Agreed there are definitely lifestyle changes that need to be addressed but I think in at least 95% of the cases people & their families have enjoyed a few years extra together and that cannot really be measured easily compared to the drawbacks. The other is that you draw some strange connections like bi-ventricular pacing caused your heart failure to worsen. Perhaps for some other reason your heart failure was getting worse and they tried the pacing to try and slow the progression of the heart failure but it did not work. If you so unhappy with your team why not get a 2nd opinion about your meds to see if the addition of anything else would help? Maybe all you need is that little dose? I hope your life gets better from here. Maybe myLVAD could start something social to bring single LVADers together. All the best.  Diane

 

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In reply to by Diane B.

Juanita P.

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..  

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In reply to by Diane B.

Juanita P.

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.   

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In reply to by Juanita P.

Deborah C.

My husband passed away 4 years ago after having his LVAD for about 2 years. I've been reading comments from people over the years and it seems they are really pushing the LVAD on a lot of people without fully explaining the complications and expense of living with an LVAD. The first year he had his LVAD our insurance company was billed for the actual dressing supplies I ordered. The following year they started billing the insurance company $10,000 an month and told them they were monitoring the LVAD 24/7. Total lie. I put in a fraud claim and it took a year before they went back and pulled the funds they had paid back. It's become a huge money making procedure that will  bankrupt some. Our medical system is so corrupt just like everything else. It's becoming extremely hard to find honest people to deal with.

I see more and more people posting that are unhappy with their decision to get the LVAD.

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In reply to by William W.

Juanita P.

Hello again William,

 

I forgot to mention the 2 week stay in the hospital in December 21 for the GI bleed, cost my insurance 895,000.00.  I just got the statement... WOW..no wonder they love me.  And, had an echo in February,  during the LVAD appt. The Dr. was 45 mins. late and I had to ask what the EF was, he didn't even stop in the office to see the outcome of the test right prior to off. visit.  I had to be ontime, but he could have cared less...he didn't just tell me results, had to ask.  he says "  all the same" 5-10 EF...I said don't believe you, I'll take my disc for a second opinion.  So the device baby does heart med, only 1, has done NOTHING.... I have great insurance.  Retired with the state and medicare with that.  This total implant, pig heart, etc...is just verbal nonsense.  Oh, btw had to fight for the disc.  Buyer beware!!!! Please do your extensive homework.  A transplant is not all peaches and cream too.  Just saying.  

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In reply to by William W.

Juanita P.

William, I wouldn't rule out transplant its a mixed bag.  But from what I hear, Men have lower antibodies than women.  Mine are very high, rules me out immediately, but you might not have high antibodies but rather very low and get a heart quickly.  Make sure you talk thoroughly to the medical team/transplant.  I've talked to several transplant individuals and hear both sides, bad and good.  I do know, I do know for a fact once they close the door in triage, its Political.  Meaning whos next with the heart.  And as a multidisciplinary team, they can make that decision with no recourse.      

 

Juanita..

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In reply to by William W.

Juanita P.

Hello again William, yes you do hear humming or rather hard pumping, if saying that correct.  However, it does diminish after a while or maybe we just get used to hearing it.  Idk but hang in there.  

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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 Pete A.

Juanita P.

Hello Pete A.. 

 

Is it true that only coumadin has been experimented with the Heartmate2?  This is what I was told by two of the big hospital, especially the one that implanted this LVAD.

 

Thank you Juanita..

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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.  

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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In reply to by linda w.

Juanita P.

I am also working on a Book, my story and experience of course.  Also the sneak peek of Heaven.  Good luck to all of you~

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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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In reply to by Dale L.

ron l.

Hey Dale. Can you not carry extra batteries and still go camping if that’s what you enjoy? Seems like you could but I’m only asking anyone who cares to indulge the topic. All the best.

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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

 

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Diane B.

Obviously no moss growing on your feet! It is wonderful to hear how you have been able to go back to traveling. Any timely hints for those of us just leaving the nest? My husband got his LVAD in August 2020 and has not felt this good for years. It is our 50th year of marriage this year and we are flying to south of France with immediate family beginning in July. With your experience any tips for us newbies with LVAD?

 

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ron l.

Hi Diane B. I think maybe you should address your question to Jack W. specifically if he doesn’t reply. It’s confusing bc there’s such a time lapse since his post back on 10/19/2020. I saw a post from Jack W. just recently when he had celebrated 11 years and his 86th birthday, if memory serves me. However, he may see it. Cheers. 

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In reply to by ron l.

Diane B.

Thx Ron. Jack replied shortly after your post.. It is so wonderful to have a forum where you can encourage others to get on with life and enjoy the extra time you have been given. Unfortunately there are some that regret their decision but I believe firmly that they are in the minority. When they told me 2 years ago that my husband only had a few weeks to live, I was totally devastated. His heart failure had been complicated by severe arrythmias resulting in 21 hours of ventricular ablations the year before. At that polnt the world came crashing down on me when they told me he could not have a transplant and they could not even do a VAD because his pulmonary pressure was too high and his right ventricle would fail immediately. Two days later God spoke through a fabulous surgeon who said he could not promise anything but he felt he could help. He was in the OR within 2 days, had a very rocky hospital stay for 90 days but came home and has improved every day. In a month we are flying to France to celebrate our 50th. with our family. He says he has not felt this good in over 10 years. Our family is so thankful for the extra time God has given us together and we plan to take as much advantage as we can. Hopefully when get home I can post something about our new adventures traveling with a VAD.

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Jack W.

Since my  October 2011 HeartWare implant,  we have celebrated 10 years on October 2021 at St.Vincent's Sydney. 

We were fortunate to have the complete original Heart Team present, including Prof. Phil Spratt, my surgeon who has been retired for several years. I was presented with a plaque and am extremely grateful for the world's best heart team!

We have read other people's comments with interest and would encourage others to travel as they seem fit, as life is for living and you only get one go at it!!