Not a candidate for an Lvad
Sun, 04/08/2018 - 9:56PMI was disappointed to hear from my doctor that right now I'm not a candidate for an LVAD. I didn't know until my doctor informed us that your heart has to be enlarged and you have to have a certain Ejection fraction in order to get an LVAD. Right now my heart isn't the size and my ejection fraction is 41% which is too high to get an LVAD. I had a right and left heart catherization done last year and during the catherization they found that I just had systolic heart failure. This year I had a right heart catherization done on March 29th and they found that I now have systolic and dystolic heart failure. I have high pressures in my heart which are also causing me to have shortness of breath with exercise and doing normal every day activities and while sitting. It was very disappointing to find out that I can't have LVAD and they I can't start the pretransplant process either because of my ejection fraction and the size of my heart.
You should be happy you don't
Mon, 04/09/2018 - 1:12PMIn reply to You should be happy you don't by Kevin H.
Stacey P.I don't feel lucky because I
Mon, 04/09/2018 - 10:43PMSorry to hear that you aren't
Mon, 04/09/2018 - 1:30PMIn reply to Sorry to hear that you aren't by Dean F.
Stacey P.It was really hard to hear
Mon, 04/09/2018 - 10:49PMI’m sorry to hear you didn’t
Tue, 04/10/2018 - 8:53PMIn reply to I’m sorry to hear you didn’t by Veronica C.
Stacey P.I have not sought a second
Fri, 04/13/2018 - 11:02PMI have not sought a second
Fri, 04/13/2018 - 10:57PMIn reply to I have not sought a second by Stacey P.
ron l.Eliquis
Fri, 05/20/2022 - 11:33AMHi Stacey. Seems I have read that one of the side effects of Eliquis is shortness of breath. And with other medications as well. Cheers!
Stacey, I wish I had the
Sat, 04/14/2018 - 11:39AMIn reply to Stacey, I wish I had the by Veronica C.
Stacey P.I don't understand why your
Tue, 04/17/2018 - 9:59PMAdvanced Directive for LVAD Recipient
Wed, 04/18/2018 - 11:11AMLVAD decision
Tue, 04/24/2018 - 6:52AMIn reply to LVAD decision by Ray W.
Brian L.Your LVAD Decision
Mon, 04/30/2018 - 1:21PMIn reply to Your LVAD Decision by Brian L.
Suzii P.There are a few differences…
Mon, 01/31/2022 - 6:56PMThere are a few differences but your story is almost identical to mine. I too, consider myself a miracle and yes I enjoy this life! My 10 year old granddaughter told me last month I better be to her college graduation! I'll sure try! We all need goals! Have a blessed day Brian!
In reply to LVAD decision by Ray W.
Carol D.LVAD Implantation
Mon, 05/14/2018 - 3:53PMIn reply to LVAD Implantation by Carol D.
Stacey P.LVAD Implantation
Sat, 05/19/2018 - 10:20PMEliquis
Wed, 12/22/2021 - 11:47PMHi Stacey P. I don’t have an lvad yet but it’s difficult to understand why your EF and size of your heart precludes one from receiving an LVAD if your symptoms are affecting QOL. On another note, I am taking Warfarin, not for a-fib, and my cardiologist thinks I should switch to Eliquis bc it will have the same effect with less potential bleeding. Does anyone have thoughts regarding Eliquis compared to Warfarin-Coumadin? Thank you. Cheers! Ron L.
In reply to Eliquis by ron l.
Larry B.Eliquis
Mon, 12/27/2021 - 11:08AMAt the stage you are at right now Eliquis is an option. Once you receive an LVAD it becomes far more complicated. My team won’t prescribe Eliquis because there is no quick way to get it out of your body if any type of surgery may be needed and that’s always a possibility for any LVAD patient at any time! I’ve been on Coumadin for so many years that I don’t even think about switching anymore. It is what it is.
In reply to Eliquis by Larry B.
ron l.Eliquis
Fri, 05/20/2022 - 11:47AMLarry B…. I was prescribed Eliquis, even filled prescription. 1st prescription was free. Before I made the switch from Warfarin, I decided to do more extensive research. I saw a too many horror stories and will wait until after my appointment with my other Cardiologist at Cedars Sinai in June. Hope you’re doing well. Cheers!
In reply to Eliquis by ron l.
Juanita P.LVAD
Mon, 01/24/2022 - 12:42PMRon I,
Lord don't run to get an LVAD, there are complications with LVADS...Its not the do all catch all. And, I might add is the 360 complete turn in life from what your used to. Totally against the grain!! If there are other interventions for you, go with that, discuss with your Dr./family, etc. If I had to chose an LVAD again, the answer would be, sorry "NO." That is my opinion only, so what your feeling would be totally diff. When they got my answer and signature on the dotted line, I was clouded, very sick, and no clue which way was going. The only ppl I had to discuss this with were my adult children who were calling the shots when I was out of it. But if I would have known the effects of an LVAD on the body and all that is involved, would def. said still "NO." As a matter of fact, I informed my team that if this Heartmate 2 goes bad, there will not be another device implanted...So let it be written, so let it be done.
Juanita...
In reply to Eliquis by ron l.
Jillian F.Hi Ron, It isn't…
Mon, 02/07/2022 - 10:42AMHi Ron,
It isn't necessarily about the size of the heart that matters, people can have a non-dilated cardiomyopathy with a low EF and still have a VAD implanted. A person does however need to have an EF of 25% or less to be considered. Usually along those lines peoples blood pressures are on the lower side making managing heart failure difficult due to the inability to increase medications that would help the heart failure symptoms. As far as your question regarding the coumadin vs. eliquis, since you don't have a VAD it would be up to you and your cardiologist if they think a different blood thinner would be best for you. Coumadin has a reversal agent where as the rest do not but coumadin can be harder to manage than the rest. Hope this helps.
Jill
In reply to Hi Ron, It isn't… by Jillian F.
ron l.Thanks for sharing your knowledge.
Fri, 05/20/2022 - 11:51AMHi Jillian. I just read back over this and thought I had thanked you at the time you responded to my post. Since I failed to do so, thank you very much.
In reply to Thanks for sharing your knowledge. by ron l.
Jillian F.You're very welcome :)
Mon, 05/23/2022 - 11:47AMYou're very welcome :)
Eliquis
Mon, 12/27/2021 - 7:09PMLarry B,
A cardiologist also told me that as long as I’ve been on Coumadin and as well as I’ve done on it, may want to remain on it.
I'm very sorry to hear about…
Tue, 01/04/2022 - 2:06AMI'm very sorry to hear about your difficulty breathing however, I will be the first to say having an lvad is not all it is cracked up to be 😂. It is better you are happier with the treatment options they offer you that to want an lvad installed. Just my opinion
In reply to I'm very sorry to hear about… by Christina G.
Juanita P.LVAD
Mon, 01/24/2022 - 12:48PMChristina G, ABSOLUTELY. The LVAD is not all its cracked up to be. As a matter of fact, they didn't crack alot of the information, omitted that from the conversation. And,,,,,,,,,,,, the longer you have an LVAD the more dependent you become with it. So if you tried to remove or unhook would have difficulties. Keep that in mind. If your EF goes above 35, you can ask to have unhooked. They will give a longgggggggggggg speech of needing it...Big $$ maker for all involved. Not saying someone doesn't need it, but there is lot of $ into this device.
In reply to LVAD by Juanita P.
Deborah C.Money Maker
Mon, 01/31/2022 - 1:17PMJuanita,
You are so correct, when my husband got his LVad he was in a trial so it was considered experimental. The first year my husband had his LVAD I ordered the supplies for changing the dressing and the water proof shower pads. It ran about 400-600 for supplies. The second year Continuum began billing our insurance a flat fee of $20,000 a month. I called the insurance company to report insurance fraud. They were claiming they were monitoring his heart 24/7. They were not monitoring anything they only sent supplies. It took almost a year before the insurance company starting taking back the money they paid out. I think there is quite a lot on insurance fraud going on. Once you have an LVad they act as if they own you. The hospital kept refusing to release him after he'd been in the hospital for 3 months after the surgery. Insisted he needed to go to their rehab in the basement. When I called the insurance company I discovered the doctor at the hospital had told them only a few days before my call that he was in intensive care. I let them know he was on the regular heart floor and walking laps around the floor. I then accused the hospital of insurance fraud and he was out the next day. The doctor that was refusing to release him never showed her face again. Another time they kept my husband hospitalized for over a week for a nose bleed. It was crazy. If you have good insurance they will take full advantage of you. I'm guessing those without good insurance end up spending at lot of money they shouldn't have to spend. The on going expenses are way too high. They don't give you any heads up about the ongoing costs. We were very lucky to have my work insurance and Medicare to cover the costs.
In reply to Money Maker by Deborah C.
Juanita P.Money maker
Mon, 02/07/2022 - 7:03PMHi Deborah, unfortunately yes this goes on all the time. However, they have a smart cookie to override here...Not only sharp as a whip, but my one daughter is a medic with 14 years in the ER/hospital setting. Both of us are clinically sound and sharp. They all over due this. Once you have an LVAD, they think they do own you and micromanage. NOT IN THIS HOUSE. Stay on top know what you need and don't. I told them they held me hostage for no reason, sucked continuous bloodwork daily, till i had no more to give. UNACCEPTABLE. As a matter of fact, they are turning my speed down next month. Enough of this. I workout, very active, maintain my own home,etc...They better come up with a good reason for all of this. Have an attorney on the back burner for sure. And I have good insurance. Worked all my life and paid for it too.
Juanita.
No LVAD
Mon, 01/31/2022 - 6:47PMI can't take Eliquis or Lasix. Both cause me to retain water. Especially Eliquis and Xarelto too. I means pounds in days. Lasix just does not work for me. Have you had any weight gain? Why not try a different diuretic then if that doesn't help a different blood thinner other than the 2 I mentioned. Coumadin is fine with me. If my ef was 41% I'd be ecstatic. I would just guess your shortness of breath is from fluid hiding somewhere. Not a Dr. Just been there-done that.
No LVAD
Mon, 01/31/2022 - 6:48PMI can't take Eliquis or Lasix. Both cause me to retain water. Especially Eliquis and Xarelto too. I means pounds in days. Lasix just does not work for me. Have you had any weight gain? Why not try a different diuretic then if that doesn't help a different blood thinner other than the 2 I mentioned. Coumadin is fine with me. If my ef was 41% I'd be ecstatic. I would just guess your shortness of breath is from fluid hiding somewhere. Not a Dr. Just been there-done that.
Not a candidate for LVAD
Mon, 01/31/2022 - 6:59PMI've had mine almost three months. You should be glad you don't have to have one yet. If possible you should strengthen your heart, if possible, to put it off as long as you can. This is a life changer.
In reply to Not a candidate for LVAD by Carl S.
Juanita P.Not a candidate for an LVAD
Mon, 02/07/2022 - 7:09PMCarl, Life change 100 percent!!! One i would love to forget.
Carl S
Wed, 02/02/2022 - 10:26PMHi. Life changer in a good way?
LVAD denial
Mon, 02/07/2022 - 7:08PMPlease, please be glad you don't have an LVAD...Yes your correct 35 and below EF. And an enlarged heart plays the criteria too. I had dilated cardio myopathy and EF at the time of implantation was 5. Now IDK where i'm at exactly due for Echo in March. last March was they say 15-20 with marginal error of 5. Meaning forward or back, 10 or 25. When you have EF of above 35, NO You don't get an LVAD...but my God be happy you don't carry that god forsaken device with you everyyyyyyyyyyyyyywhere. With a driveline coming out of your stomach to the main controller. Life will not be the same, not close! I'm sorry your going through all the trouble with your heart...Do they give you alternative for care/treatment? To built your EF. There are things you can do...
Uptravi giving me bad headaches
Mon, 05/23/2022 - 11:01AMI've been given a new med called Uptravi and am having bad headaches which is side effect. Is there a med to help with eliminating the headaches? Please advise and thx.
Doing well ron l.
Mon, 05/23/2022 - 11:41AMThanks for asking. You are always going to find different opinions about getting an LVAD. There are those that have no5hing positive to say and then there are many that praise it’s ability to provide a better quality of life. You know, the old glass is half full analogy.
I received my HM3 when it was still in the study phase, almost six years ago now. Prior to receiving it my quality of life sucked! I couldn’t even walk out to the street to get the mail without being out of breath and exhausted. I had been on the transplant list as a cat 2 for about 7 years by then. But, my heart had way too much pressure to make it transplantable. I was told the pressures would overwhelm a new heart. So, even though I was on the list we all knew I was never going to get one. I was eventually admitted with another case of congestive heart failure and during that stay they offered the HM3. I turned up my nose and was discharged after some milrinone therapy. Felt pretty good for a few days and then it hit again. I called my doc and told him I had reconsidered the HM3 and was ready. The surgeon called me that night and 3 days later I was admitted. Two days later I was implanted.
Life hasn’t been perfect for sure but it sure beats the alternative which was to die a slow agonizing death! Was in the hospital for 10days and then discharged. Many people my age, 66 at the time, and younger had complications such as infections, etc. I had none. Although 1 yr after being implanted I was readmiited in a v tach storm. Spent another 10 days in the hospital where I eventually had a cardiac ablation which was another five hour procedure. But, none of this was the LVADs fault. A bad heart is a bad heart, that’s life.
for the better part of the last five years I have played golf twice a week, mowed the grass weekly, washed our vehicles when needed, etc. the only thing I cannot do is get in a pool or take a bath. I shower every morning, sometimes twice if I have played golf 5hat day. We don’t travel by air anymore. But that’s just a personal preference, not a fault of the LVAD. In six years I’ve never had anyone question my LVAD. I would gladly explain it to them if they asked. I wear a cheap $35 vest I buy on Amazon to carry my equipment when I’m out anywhere. People probably think I just an eccentric old geezer and they wouldn’t be far off.
It is what it is. I went into this with full knowledge of what was going on. But, I’ve been dealing with heart failure for 29 years now. I had a five way bypass in 1973. My major reason for taking myself off the transplant list was because my quality of life has improved drastically and I didn’t want to take an unnecessary chance on a heart transplant. All I could think of was the old baseball saying, “three strikes and your out”. The transplant would have been the third time I was cracked. I always try and take a positive approach to my healthcare. The alternatives are unacceptable. Take care of yourself. Best wishes.
In reply to Doing well ron l. by Larry B.
ron l.Larry B. Good to hear you’re doing well.
Fri, 06/03/2022 - 11:25PMAnd staying relatively active. Agree there’s a mixed bag of opinions. Haven’t taken a count but seems there are more positive. Godspeed to all. Don’t have any figures but see where more like you, who have the option, appear to be getting an LVAD. 29 yrs., you’ve been doing something right. I’ve been on Coumadin for 14 years and more than likely will remain on it. How long have you? On a scale of 1-10 do you have a lot of energy, and are comfortable with no symptoms? Being that your QOL has improved drastically, isn’t that the hokey pokey - that’s what it’s all about ? Continued success. All the best!
In reply to Doing well ron l. by Larry B.
Sharon S.Doing well Ron l
Mon, 06/06/2022 - 6:43PMm.Larry B Thanks for your positive comment. My husband received his Heartmate 3 LVAD in Aug 2019 after suffering from CHF for many years. After almost 20 years of medications and procedures - defibrillator, pacemaker, ablations, cardioversions etc. the only option was LVAD or home to hospice. Because he was 84 at the time, we went through 10 days of tests, exams with many specialists, etc. before he was approved. On the positive side, he did not have any cardiovascular disease or clogged arteries and was in otherwise good health. His cardiomyopathy diagnosis years earlier was likely caused by a virus. At the time he was the oldest patient approved for an LVAD at the University of North Carolina, Chapel Hill. Yes, there are added procedures and care, but several months after my husband received his LVAD, I told him how proud I was that he never complained, his answer to me was "I'm alive! My husband also wears the vests from Amazon, which I take to the tailor and have them invert the zipper, so they zip from the bottom to the top. It makes them easier when you sit down. We have flown across country twice & found that notifying TSA Cares ahead of time is very helpful getting through security. I could go on & on but bottom line, we give thanks every day for the miracle of the LVAD that gave us a new lease on life. Prior to August 2019 my husband was in the hospital every few months, since then he has not been in the hospital once.
In reply to Doing well ron l. by Larry B.
Sharon S.Doing well Ron l
Mon, 06/06/2022 - 7:30PMm.Larry B Thanks for your positive comment. My husband received his Heartmate 3 LVAD in Aug 2019 after suffering from CHF for many years. After almost 20 years of medications and procedures - defibrillator, pacemaker, ablations, cardioversions etc. the only option was LVAD or home to hospice. Because he was 84 at the time, we went through 10 days of tests, exams with many specialists, etc. before he was approved. On the positive side, he did not have any cardiovascular disease or clogged arteries and was in otherwise good health. His cardiomyopathy diagnosis years earlier was likely caused by a virus. At the time he was the oldest patient approved for an LVAD at the University of North Carolina, Chapel Hill. Yes, there are added procedures and care, but several months after my husband received his LVAD, I told him how proud I was that he never complained, his answer to me was "I'm alive! My husband also wears the vests from Amazon, which I take to the tailor and have them invert the zipper, so they zip from the bottom to the top. It makes them easier when you sit down. We have flown across country twice & found that notifying TSA Cares ahead of time is very helpful getting through security. I could go on & on but bottom line, we give thanks every day for the miracle of the LVAD that gave us a new lease on life. Prior to August 2019 my husband was in the hospital every few months, since then he has not been in the hospital once.
In reply to Doing well Ron l by Sharon S.
ron l.Hi Ms Sharon S.
Wed, 11/30/2022 - 9:58PMPlease allow me to ask a question. Your husband is 87, which I think makes him the most Sr. LVAD recipient on this blog. There’s another gentleman who is 86 and has had an LVAD for 10 or 11 years, and doing well. Thankfully age is not always a hindrance The HM3 seems to be more advanced, although there are others who’ve had the HM2 for more than a decade. Has his experience for the most part been well tolerated ? Travel especially. Thank you and continued success.