9 years today (20th Oct 2020) living with LVADMon, 10/19/2020 - 9:19PM
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).
Worth sharing!Sat, 08/14/2021 - 7:10PM
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….
AdviceMon, 10/04/2021 - 4:35AM
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
Wow!!!Mon, 05/02/2022 - 3:23PM
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?
Jack W.Tue, 05/03/2022 - 12:50AM
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.
In reply to Jack W. by ron l.Diane B.
Thx Ron. Jack replied…Tue, 05/03/2022 - 10:58AM
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.
In reply to Thx Ron. Jack replied… by Diane B.ron l.
You’re welcome Diane.Thu, 05/05/2022 - 8:07PM
Happy for you. Safe travels and Godspeed !
In reply to You’re welcome Diane. by ron l.Diane B.
Thank YouThu, 05/05/2022 - 10:39PM
Update!Tue, 05/03/2022 - 3:52AM
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!!
In reply to Update! by Jack W.Diane B.
UpdateTue, 05/03/2022 - 11:09AM
So good to hear you are doing so well. I agree completely - We all only get one life, and especially now with covid being so disruptive there are many people who are afraid to go out and enjoy life. Whether a VAD or not, we need to leave the nest and try our wings again. The pandemic has now been declared an endemic (Flu, cold etc.). As long as you have taken the precautions you feel are appropriate for your condition what is stopping you? Jack I believe you are a great source of hope for all LVAD recipients. I wish you all the best.
AnemiaThu, 05/05/2022 - 8:10PM
Has anyone had to deal with anemia before or after the lvad? Regards!
In reply to Anemia by ron l.Mercedes S.
Anemia and hyperglycemiaFri, 05/06/2022 - 8:02AM
I lost blood. Had 4 quarts of blood. I'm good now. I do take iron pill. Yuk. Not easy
In reply to Anemia and hyperglycemia by Mercedes S.ron l.
Mercedes, goodSat, 05/07/2022 - 3:33PM
Due to surgery? Do iron supplements work for anemia for the most part? Not easy bc of the taste? Thnx. Cheers!
In reply to Anemia by ron l.Diane B.
AnemiaFri, 05/06/2022 - 10:20AM
Hi Ron. My husband had multiple problems after OR and severe anaemia was one of them. He had multiple blood and platelet transfusions and iron infusions during admission. It is still low end but has increased with iron supplements.
In reply to Anemia by Diane B.Juanita P.
Problems with LVADFri, 05/06/2022 - 11:10AM
Hi Diane, unfortunately that was an issue I had brought upon due to coumadin "rat poison" and the LVAD device. This last December throughout the month had 14 units of Blood and times two surgery. Yes it has everything to do with the LVAD and blood thinner. I have never, never never had a problem with anything for that matter and the stomach NOOOOOOOOOOOOOOO. But welcome to LVAD world...The medical field acts as though they did you a favor. What a laugh.
In reply to Problems with LVAD by Juanita P.Diane B.
Jaunita : It seems that only…Fri, 05/06/2022 - 1:05PM
Jaunita : It seems that only luck you have is bad luck. I think Ron was talking about post op anaemia without a bleed. It is very common for people with chronic disease (not just LVAD) to have anaemia. Your's was obviously from the bleed. Does your INR maintain well or does it bounce a lot?
In reply to Jaunita : It seems that only… by Diane B.ron l.
Diane, you’re correctSat, 05/07/2022 - 3:29PM
I was talking about pre, and post LVAD without a bleed. Coumadin can be the cause of minor amounts of blood loss pre LVAD, and post LVAD as well I’d suppose. Coumadin was about the only anticoagulant at the time of most early LVADs from what I’ve read. There’s a relatively new blood thinner (Eliquis) that does not cause as many bleeding episodes and does not require INR monitoring. And does not preclude you from enjoying green leafy foods. My cardiologist has some patients requesting it. Problem is it’s very expensive. There’s a generic (Apixaban) that is being held up in court for patent reasons, but is being appealed and maybe will be available soon. Can only hope.
In reply to Problems with LVAD by Juanita P.ron l.
JuanitaSat, 05/07/2022 - 3:54PM
Thank you for replying to my question. I wish you all the best. Cheers!
In reply to Anemia by ron l.Juanita P.
AnemiaFri, 05/06/2022 - 11:15AM
Yes I have, welcome to the LVAD world and "rat poison" coumadin. One of the medical issues that go with this device. And with a shortage of blood in this country due to covid, lucky to get blood. Thank you to all those that donate. See between the LVAD that hits vessels constantly and the blood thinner daily, it erodes your vessels, lining down. And then blood so thin, bleed out. I have to take iron x2 daily to keep it up. And have to watch your greens due to the interference with thinners. They only have coumadin due to the only blood thinner that was experimented with the LVAD. Boy they really care about us.... Nothing has changed in almost 6 years since had LVAD.
In reply to Anemia by Juanita P.Diane B.
CoumadinFri, 05/06/2022 - 1:27PM
Not a true statement. They use coumadin because the INR can be lowered quickly with Vit K if you have a bleed. That is not so simple with all of the other blood thinners on the market. Out of curiosity what type of LVAD do you have?
In reply to Coumadin by Diane B.Juanita P.
Bleed/Vitamin KSun, 05/08/2022 - 2:04PM
What's not a true statement? We are all aware there are other thinners on the market. Not rocket science. Coumadin has got to be the worst. Diane, your INR can be lowered quickly period with Vit. K... Very rapidly depends on how much ingested. No one gave me Vit. K to stop or slow the bleed while in the hospital... LOL. thats pretty serious as well to put too much Vit K because now you have the threat of blood clots, jamming the pump. WTH?? Also if you lower INR with K, then will need to increase thinner to bring INR up to level/therapeutically. So its back and forth. Its called Heparin piggy back off the coumadin and do the surgical procedures to find the bleed. its not going to magically disappear. This statement of not true I'm not getting. Ask your team/if that is their prodecal then, it is what it is.
Everyone, take care, take care of devices, and decisions. Obviously very mixed information in this room which tells me the medical team/hospitals need consistency with their information and therapeutic care of patients and device. This support group is not a battle of wits, but sharing experiences, etc. of the LVAD. Regardless of what pump you have, there will always be issues connected to this. I'm baffled, you didn't like a comment, took personally, and then the argumentative statements come out. Sorry for me. Right I'm sure you are. I feel sorry for you that is totally burnt out as the care taker, question asker, etc. I'm not here to argue. Everything i shared in here has been honest, and what i was given by the medical team. Coming at me with thats untrue, hey sorry to hear that. You can't make this up and why would you want to. Out of curiosity, what heartmate does your husband have? Who cares, its an LVAD. There is bleeding threats, infection threats, driveline tears, the list goes on.
In reply to Anemia by Juanita P.Sandra K.
I had my (emergency) lvad…Sun, 06/04/2023 - 9:42PM
I had my (emergency) lvad surgery during the pandemic and there wasnt any shortage of blood. My hemoglobin was a 5. Should have been a 12. Juanita, are you in the USA?
And Coumadin is NOT RAT POISON. How can you say that? This site is for support, not to vent whatever you want to. People come here to get information not scare tactics and confusion.
Diane, you’re correctSat, 05/07/2022 - 1:12AM
I was referring to pre or post implant. Although it can cause a serious bleed, Coumadin can also cause a minimally slow loss of blood resulting in borderline to moderate anemia. Good to hear that iron supplements will raise it?
Warfarin (Coumadin) has been the only choice for years until recently. Bristol Myers’ Eliquis has proven to be safer than Coumadin in regards to bleeding and doesn’t require inr monitoring. And green leafy vegetables are ok to enjoy. Problem is it’s very expensive. There is a generic (Apixaban) that has recently been blocked by court order protecting Bristol Myers’ patent, but is being appealed and could be reversed. My Cardiologist prefers it bc of its safety and convenience but understands its currently cost prohibitive. Here’s hoping. Cheers.
In reply to Diane, you’re correct by ron l.Juanita P.
AnemiaSat, 05/07/2022 - 7:20AM
And to recap, I had the serious bleeding, surgery twice, until they found the bleed. What a circus. Diane, this took me away from my family, christmas etc. I was NPO the entire time, tired, i can go on. Oh and as I mentioned 2 units of blood every two days 14 total units. Hmm I consider that bleed REAL SIGNIFICANT. Enough said. And do you know why it causes bleeds? Please let the team explain. Has to do with thinners and continual blood flow, that''s why we are pulseless most of the time.
I’d just sayMon, 05/09/2022 - 11:17AM
I have read that LVADs are approaching the outcomes of transplants and may one day be the gold standard. This from esteemed institutions and Physicians. That’s not to say there are not going to be issues and difficult times with either. And that’s unfortunate to say the least. It’s to say imo both are miracles of research and development advancing to who knows what and where. Godspeed!
14 yr. anniversaryFri, 06/17/2022 - 3:14PM
Google: Newark Hospital Patient Sets NJ Record for Living With Heart Pump
In reply to 14 yr. anniversary by ron l.Jack W.
14 Yr. AnniversaryThu, 02/16/2023 - 10:24PM
Congratulations to Mayra Rodriguez in the US on attaining 14 years (18th May 2022) with a Heartmate 11 LVAD.
Keep it going!
In reply to 14 Yr. Anniversary by Jack W.Jack W.
HeartWare VAD RecordThu, 02/16/2023 - 11:28PM
Since 20th October 2011 and 4101 HEARTWARE VAD days later (11.33 years), it was acknowledged by St.Vincent's Hospital in Sydney Aus. that this was the longest on record in Australia and possibly the world. Many many thanks to St.Vincent's Heart Clinic and the team, the wonderful doctors and LVAD Coordinator Desiree. They have been marvellous and nothing is a problem to them.
Even though two sections of the lifeline have been repaired at different times and part of the lifeline replaced, there has never been an infection. I maintain it myself.
Still doing regular exercises at home (exercise bike, weights, grinder) and play around with the boat as often as possible.
My motto is 'common sense must prevail at all times!'
In reply to HeartWare VAD Record by Jack W.Patricia C.
Heartware HeroThu, 03/02/2023 - 5:17PM
You give my husband and me so much hope!
In reply to HeartWare VAD Record by Jack W.ron l.
AmazingTue, 03/07/2023 - 10:56PM
Hopefully one day this will be the norm, or close to it. I think in all probability that you are on the path to be the first ever LVADer to make it to 90.
Amazing and all the best….rl
What is recently blessed with a new heart transplantWed, 02/22/2023 - 5:53AM
Have a lot of equipment from the heartmate three from shower bags to controllers, batteries, battery chargers, electric controllers, willing to donate to someone in need still recovering at New England Hospital at present please post me your location and needs and will reply for more info
Congratulations!Mon, 03/06/2023 - 11:31AM
Congratulations on 9 years! My mom will celebrate her 1 year anniversary this coming May and I am so thankful for the additional time we have been given with her.
9 yrsWed, 03/08/2023 - 9:10AM
That is great. What date did you get your LVAD. This is encouraging..
Glad to hear Jack W.!Sun, 06/04/2023 - 9:35PM
Glad to hear Jack W.!