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Cat S. Caregiver

Where are the recent posts, I am scared!!

Hi, hello, good afternoon! My husband is jumping through the hoops to get qualified for the Heartmate II. We're just about done and meeting with the LVAD surgeon in just a week. I don't see many recent posts and it concerns me dearly. My husband is not a bridge to transplant due to his age (73) and it seems that many of the older posts that I have read talks about all the complications and in some instances (death) rather than the situations where the LVAD has given the recipient a quality of life and it's been beneficial. Is there anyone that can share with me something good that has resulted in the LVAD surgery? I am scared!
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Jim H.

Hello,

I had my LVAD installed 1-13-20. I was truly on my death bed before the operation. Everything went well and I came home the first week in February. I am 74.

 

Covid lock down has been MUCH WORSE than the operation!  There is a bit of lifestyle adjustment, but my wife and I are looking forward to several good years. I strongly encourage you to have the operation performed! Life has been VERY good since mid Jan: I’m just anxious to burn the masks and get back to shaking hands and giving hugs!

Jim Hunt

Kearney, NE

 

 

 

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ulric k.

best home boxing workouts

At-Home Shadowboxing Workout. Round One: Right/Left Punch Combination. Rest for one minute. Round Two: Upper Cut Combination. Rest for one minute. Round Three: Right/Left Punch Combination. Rest for one minute. Round Four: Left/Right Combination: For the last round you'll combine a variation of round one with round

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Myriam T.

My wife received her LVAD on June of 2012. She promptly recovered and in a couple of months was driving and shopping. She is in amazing health. We have traveled nationally and internationally. She is able to do everything she used to do when she was healthy prior to congestive heart failure EXCEPT go swimming and dipping into the water. She has had several internal bleeding issues BUT with a quick blood transfusion that has been taken care of. We are extremely grateful that she has lived to see our grandkids graduations, the birth of another granddaughter an amazing great grandson, we have family reunions every month and family vacations once a year.

The LVAD is a miraculous machine that was God inspired to give life and more abundantly. People are amazed that my wife carries her heart (mate) in her purse, backpack or specially made vest. She is a fashionista and looks 20 years younger than she actually is. We will be celebrating her 71st Birthday in a couple of weeks.

A large TV network produced a documentary about her  surviving after she had been given 3 months of life and put on hospice. The documentary was titled WHAT FAMILY, FAITH AND SCIENCE CAN ACHIEVE two years later they did a follow up titled  THE WOMAN WITH A HER HEART IN A PURSE. We have always believed that this was God's answer to many prayers for her when she was dying.

Life with a vest is better than no life at all.

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In reply to by Myriam T.

ron l.

That’s very interesting. In many cases I’d think life may be better with a vest than many without. So far from what I’ve gathered some have had an lvad for 14 years until the age of 88, one going on 14 years and still going. Continued success. Inspirational.  Ron l

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Linda H.

My 57 y/o husband had the Heartware LVAD implanted on February 10th. He was released from the hospital day 10 post VAD. though the actual pump seems to be doing well and no alarms etcetera,  all he wants to do is sleep. In the last 24 hours he has slept 20 hours! I also cannot get him to motivate to do much moving around when he is awake. Can anyone tell me if this has been their experience?

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In reply to by Linda H.

Greg B.

Hi Linda!

Wow, being discharged 10 days post VAD seems really quick! I was in the hospital for ~30 days and it was probably another week after discharge when I really started getting my energy back. And I was 37yrs old when I got mine ~2yrs ago!! I was in pretty rough shape going in though...but after recovery I felt like a new person!!

Everyone is different obviously, but I do think your husband's body is still recovering, which takes a lot of energy and rest is a good thing!!

If you do have any concerns do not hesitate to reach out to your transplant team, they are usually happy to answer questions and have seen many different cases.

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In reply to by Linda H.

Larry B.

I was also discharged 10 days after receiving my HM3. The body takes a tremendous beating from the operation and the stay in the hospital along with any pain relievers they may have prescribed. It pretty much took me a month before I wanted to get out of my chair and during that stretch I dozed off and on all day and night. Finally I was able to get up and start walking around the house. I had a route mapped out from my chair to the dining room, dining room to kitchen, kitchen to down the hallway, hallway to front bedroom and then back to my chair. That was a major accomplishment when I could do it all without stopping. When I could do it 10 times without stopping we moved outside! First time out I only made it about 50 feet before turning around and going back to my chair. I was 66 and now I’m 71. We all react differently but to still want to sleep is normal. But, within 4 months of being implanted I was back to playing golf twice a week. I do everything I used to except swim. Small price to pay. I’m surprised your team didn’t advise you about 5he recuperation period but he sounds normal to me. He’s beat, weak and exhausted. 

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Reiss T.

If my understanding is correct, there is a set insurance reimbursement amount for any particular procedure such as an LVAD implant. It is to the hospital's financial advantage to discharge your sooner rather than later if it is deemed medically safe to do so. I have heard that their break even for an LVAD is around 21 days. If you stay longer, they lose money, even if it is medically necessary. Each medical center will have its own protocols and methods and the doctors in charge ultimately decide. This is an oversimplification but if they can safely discharge you in ten days it's potentially to their advantage.  

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Jackie W.

My 76 yr. old husband has just been told about L-VAD surgery from his cardiologist.  I'm very concerned about the quality of life after and even if he would survive the surgery.  He's been on insulin for 10 years, has always had asthma, and has Parkinson's.  He had a triple bi-pass in 1998 and gastric bi-pass 5 years ago.  He has an enlarged heart and EF is 22.  I would love to hear from people close to his age that have gotten the L-VAD.  I'm so scared about all of this! 

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scott s.

I was 61 when my lvad was done.  Wouldn't trade it for anything.  I had been taken to Duke more dead than alive a couple times.  Before lvad I would walk about 5 or 6 steps and be totally exhausted.  I also am not a bridge to transplant.  Organs won't support it.  I had no fear problems as I was so close to being dead or shutting down in cardiac arrest enough times that the question became what was going to stop me from okaying surgery?  A fear of dying?  I chose to face it rather than hide under the bed and wait for it.  Mind is dead, just waiting for the body to catch up isn't living.

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In reply to by scott s.

ron l.

I’d be interested to know when you received the lvad at Duke. Thanks and cheers!

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Ronald H.

Hi, my name is Ron. I am 67 years old. I just had the LVAD procedure done on 6/1/21. I am doing great, and now living on my own, independently. I am driving, shopping, appointments ....etc. My life has changed dramatically, mostly positive. The recovery is tough, but if you put in the work with Physical Therapy, it goes relatively fast. I must say, with all I have said in the positive, the negatives are there also. I do not live as I did before. Don't just jump up and be off. The equipment takes some getting used to, especially showering. I have my processes which I go thru in regards to taking care of myself and my body. I have gone from an E.F. of 10-15, and increased 25%. My life expectancy, well lets say, as I am now, I should outlive that by a considerable number. I am writing to encourage those that are questioning whether to do or not. Your call, but I highly recommend this procedure. Todays LVAD equipment, especially the pump is top shelf. I have Heartmate III, and I am very happy with the outcome. Be Well, Be Safe, Ron

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In reply to by Thomas T.

scott s.

I change my own dressing.  I learned how at Duke.  My son and daughter in law did the  daily dressing for a few weeks but as I got stronger I started doing my own.  I learned and I am glad I did.  I used to do it in front of mirror until I got comfortable.  Nurse practitioners at lvad clinic showed me a few things.  Taking off old bandage is difficult.  7 day bandage is easier to change but a little more painful to remove.  need to shave area from time to time.  It is hard at first but it gets easier.

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In reply to by Mercedes S.

Dick T.

I've had my lvad since December 4, 2019. My wife originally changed my dressing but i wanted to do it myself. Learning to put on the sterile gloves was the hardest part. Ive been changing my own dressing for about a year now with no complications. 

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In reply to by Thomas T.

Rosa A.

I do them for him. I am his wife Rosa. Don't be scared. You are alive. Just do your best to get better. Walk ,eat well, take your meds properly and be as happy as you can.

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scott s.

I embraced the lvad as a necessary change in my life.  After 20 plus years of heart failure when this was presented as an option to stay alive I took it.  The time for fear had long since passed.   After years of dealing with it what was to stop me frm living life?  A fear of dying? 

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Mercedes S.

How much does anyone excise…..  It seem I can excise as much as I can breath. There some days I do ok. Some day I does go near my excise equipment. All I can do is nap. I was told I should excise 45mins twice a week.

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In reply to by Mercedes S.

Richard G.

Hi Mercedes - I assume your post is about exercise. I live near Albuquerque where there is an LVAD clinic and a heart rehab gym. I am in no position to give you medical advice so I will not.  I'm simply posting about what I've done because I had the same questions.

8 weeks after LVAD surgery my cardiologist sent me to the heart rehab gym. Their trainers started me very slowly and gradually on the seated cardio machine (I used Octane) because that's the easiest. I lost 45 pounds of mostly muscle leading up to and right after my surgery so my doctor wanted me to gain weight, build back muscle and gain stamina as soon as I could exercise.

I'm not sure where your recommendation for 45 minutes twice a week came from. I believe the American Heart Association recommends 30 minutes 5 times a week for people with heart disease who's doctors say they are safe to do exercise like walking or bike riding at a sensible (moderate) rate. 

I used oxygen initially while exercising and over time lowered the O2 supply from 3-4 LPM to 1-2 LPM gradually over a period of 3 months. Hopefully you don't need oxygen, but most people at the heart rehab gym used it during exercise. For the first 8 weeks I did the seated Octane trainer with low resistance 3 days per week (Monday, Wednesday and Friday), increasing the amount of time exercising rather than increasing the resistance a little each week. After a month. I went to 4 days a week for a month and now I'm at 5 days a week. In the beginning, I did 2 weeks of 15 minutes of cardio on the seated cardio trainer, and increased by 5 minutes every 2 weeks.

It is a slow methodical progression that starts very easy and builds slowly and gradually. Keep a journal of what you do so you can watch your progress and show it to your doctor. If I got stuck at any stage, I'd back off a little and stay at that rate for a week or two and then attempt to slowly increase again.  I continue to add either time, grade or speed a small amount each week until I get out of breath and then I back off and continue. It adds up over time. In a month from now, I will try to add a glider or more complex cardio machine and mix it in with my training regime. Pay attention to how this makes you feel and be patient - you will get through this.

I'm going to keep increasing until my legs no longer feel weak and the varicose veins (from poor blood flow return from my legs I believe) diminish. Of course, I don't know what your doctor has requested of you regarding an exercise regimen. I wish there were more informative articles available for search on Google. Maybe others on mylvad.com will have suggestions. 

A last comment that on some days all you can do is nap... I have felt the same way since my surgery and I used to get frustrated about it. Be easy on yourself. Your body will probably require more sleep but slowly that is likely to diminish. I was told an LVAD was a 6 month recovery - it is 6 months since my surgery and I'm around 2/3 recovered. It will probably take 3-6 additional months to be 100%.  Eventually you MAY be able to exercise less than 5 days a week, but you will need to continue to exercise regularly in some fashion to maintain your muscle strength, bone density and keep your heart and lungs in shape. 

I hope this was helpful. Again, please talk to your doctor - maybe they can put you in contact with a personal trainer in your area who is familiar with LVAD recovery and possibly write you out an exercise program.

Best of luck to you!

Rick

 

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Ken D.

I just ordered a tank top from LVAD Gear to carry batteries and controller.  I can’t find  the 6 pocket Under  Armor standard foot ball short that were recommended. I need xxL.  Is there anything else that is similar? 

 

ken Davis

just got my Heartmate 3 on Oct. 14

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Reiss T.

I had no problem ordering mine (Underarmour) from Amazon. Also from www.undermor.com. It's called a "mens' 6 pocket football girdle". Have you tried these sources?

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Michael H.

I don't often visit mylvad but there is a lot of misinformation and apparently lack of direction from doctors post surgery.

Maybe it works for some but I would never NOT cover my site to shower. It's not that hard and safer. I can't imagine using Press & Seal to shower. Or buying supplies from a non specialized medical supplier.

I have Medicare and a Medicare Supplement and every supply is fully covered, both site daily kits and bandages to cover my site when showering.There is a great resource for these and an earlier poster recommended this company too- '

Wound Care. 888-287-9797. Fast, friendly Customer Service.

I had to have my Heartmate II, (Jan 2018) removed due to blood clotting issues and now have a Heartmate III (Dec 20) so I've been through a lot of supplies. Never had site issues, and never had to pay a single penny out of pocket. I have been very fortunate.

Please talk with your cardiologist about these issues.I know it maybe difficult to resolve LVAD issues, especially if your doctor is any distance away from where you live.

Good luck. It gets better.

Mike H.

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Ken D.

My husband got his LVAD in October 2021. It has been challenging. There were complications but we got through them all. He now works fill time and is back to golf. Getting the LVAD was the right decision.  We have even visited LVAD candidates in the hospital,to give them the unvarnished facts about our experience.My husband is 75 years old.

Pat Davis

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In reply to by Ken D.

Mariza M.

Hi Pat

Congratulations to your husband. The early months with LVAD are complicated but, once we are adapted, life becomes better and we are able to resume some activities.

I’ve have mine for almost seven years now and was recently submitted to a breast cancer surgery without major problems.
Bleeding and infection are the major problems that we have to avoid when living with an LVAD. 

Hope he has a long and safe life with his LVAD

Mariza Morgado

Brazil

 

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Bob S.

I was 69 and in end stage heart failure. Had a few bumps in the road the first year, but I'm now 74 and doing well enough to be able to space my visits to the cardiologist to 'see you in 6 months'. I see you're talking HeartMate II. Why not HeartMate III? 7-8 lbs. vs. 2-3 lbs. Ask your surgeon about this.  Sue S.

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Reiss T.

Ron, big congrats. I understand your journey. I will be 12 years out in September with my HM II. Have some other issues but the pump keeps rolling on. 82 years old, UFHealth, Gainesville, FL

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In reply to by Reiss T.

ron l.

It’s not my anniversary.  I was just suggesting to everyone to Google the interesting story about 14 yrs. with a HeartMate 2.  Going on 12 yrs. is remarkable in its own right.  All the best for many more!

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Myriam T.

This week on June 15th will be my 10th Anniversary of my Heartmate II. I received it when I was 63 years old I am now 73 years old. The LVAD has given me ten years of amazing life. I have traveled internationally several times and I have enjoyed the benefits of a fruitful life. The device has allowed me to be at the birth of  a great grandson , the graduation of three grandchildren and countless opportunities to travel nationally and Internationally. I have many time recommended many potential recipients to ABSOLUTELY get it done.

There have been some inconveniences with bleeding and have required an occasional blood transfusion BUT I live a full and active life and can put on with the inconveniences that come. My device was installed at Mayo Clinic in Phoenix AZ.

Myriam A Torres

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In reply to by Myriam T.

Mariza M.

Congratulations, Myriam

It’s very important to hear such successful experiences with LVAD. 
I had mine almost 7 years ago, when I was 60. The first two years were quite difficult, but after that It has been okay, but I am afraid of traveling. 
Hope you still have a very long life with your LVAD.

Cheers

Mariza Morgado

Brazil

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In reply to by Myriam T.

Harman S.

Congratulations myriam. Your story gives hope and strength. My dad recently got his lvad surgery done about 3 months ago. He is 67. The first month was tough but he is doing great right now. As you mentioned international traveling in your post, i need some information about the precautions and safety measurements that we can take for a safe traveling. We are planning to visit my sister in Prince George bc, canada. Its a 10 hour drive from seattle.I think the nearest lvad center would be 7 hour drive from the place where we are visiting. 

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Rebecca H.

My guy received his lvad at the beginning of the worst of covid. The issue with the hospitals is they have a script to follow and they hand you a book that shows how to shower and such. There was alot we did not learn due to the covid and had to figure it out for ourselves. He has had his 2 yrs. He has had one infection and is still on medication for it. Instead of covering your wound in press N seal for a shower they make 8x12 tegaderms that cover everything that needs to be covered for the shower. We also purchased a hand held shower sprayer similar to the ones on a kitchen sink but made for a shower, so he has more control where the water goes. He has an old 50's house with a small bathroom. His complaint is that when he has to sit on the toilet he has no place to set his batteries and controller. That's one thing they never tell you about. It is a learning experience and reading a lot of the articles listed will help you. A current issue is the supply chain. When you get the change kits keep any leftovers in case you need to make up your own. I am his caregiver and we are currently in that situation. Your drs. may be able to give you some to hold you over. If they did not tell you also the leftovers that your cannot use such as tape and gauze can be passed on to the animal clinics. Hope this helps. Continue to talk to people and read as much as you can. Becky H

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Ross S.

Does anyone use something like a clip to hold their shower bag that will break if you were to fall in the shower.