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Discussions: Recipient Support

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  • Recipient Support
Profile picture for user broyal
Nancy C.
Recipient Support

This community needs more resources, help and input

Last activity 2 days 3 hours
This comment is great for first timers going through or about to go through surgery. It's great for getting answers to some quick questions and for getting support in times of fear of the unknown. But, this community really needs support from medical professionals. It needs to have moderators and...
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Joanne L.
Recipient Support

Covid 19 fears

Last activity 4 months 1 week
Hi- I am a new recipient for the Heartmate 3. My surgery was on May 3 of this year. My recovery has been a little rocky- but my medical team has really helped and I am now stable.. That said- I have really been having quite a bit of trouble with worrying about contracting Covid. I had my usual labs...
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Gregory D.
Recipient Support

Supplies for your VAD...Yeahh

Last activity 1 year
Just got this from a company out of Florida that my MCMS team was working with. Continuum They can supply all of your patches, foley anchors, silver foam etc. It is billed diretly to Medicare which is a god send, since I was pushing $450 per month, now I can save what I didn't have to begin with...
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Tonya E.
Recipient Support

Does anyone else feel.........

Last activity 1 year 3 months
Hi I have had my heartmate 3 since November 2019. And spent 2 months in hospital, since i have been home. I have had driveline pain since they cut out my stitches at the site, in February of this year. I have had CHF with an injection fraction rate of 15 to 20% off and on for 17 1/2 years before i...
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Anonymous
Recipient Support

Exercising with an LVAD

Last activity 2 years 3 months
I've been trying to get some information about trying to do yoga with the lvad and how to get started. Has anyone tried or is anyone doing it? . At being 63yrs.old, I need some form of exercise; I would appreciate it. Thank you and Peace be with you.
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Anonymous
Recipient Support

Exercising with an LVAD

Last activity 4 years 8 months
I've been trying to get some information about trying to do yoga with the lvad and how to get started. Has anyone tried or is anyone doing it? . At being 63yrs.old, I need some form of exercise; I would appreciate it. Thank you and Peace be with you.
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Anonymous
Recipient Support

Exercising with an LVAD

Last activity 5 years 1 month
I've been trying to get some information about trying to do yoga with the lvad and how to get started. Has anyone tried or is anyone doing it? . At being 63yrs.old, I need some form of exercise; I would appreciate it. Thank you and Peace be with you.
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Profile picture for user CayeaSBU05
Christopher C.
Recipient Support

Low Flow alarms on HeartWare LVAD

Last activity 5 months 2 weeks
Hello, my name is Chris and I have had my HeartWare LVAD for a little over a year now. Life with the device had gone mostly as well as could be expected although I have experienced one problem that is quite a nuisance and was wondering if anyone had some feedback or advice on how to tackle this...
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Ibrahim S.
Recipient Support

LVAD Flow

Last activity 2 years 8 months
Last week my LVAD flow reduce from 4. 5 L to 2.5L i dont know why thia happen now i complete one week with 2. 5L And my INR increase last week to 6 Is there any relation between INR and flow?
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Cindy R.
Recipient Support

BioPatch protective disk with CHG

Last activity 3 years 6 months
I have had an LVAD for 8 years. The new daily cleaning of my driveline is a pre-packaged kit, which includes an effective infection prevention disk called biopatch. Because of skin issues, I am unable to use them. Every day I have a new disk to add, and have a good-sized bag now. They are packaged...
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Dawn C.
Recipient Support

Online Support Group Tonight! Join us!

Last activity 4 years 1 month
Join us TONIGHT at 7pm EST for an interactive video support group designed for LVAD recipients and caregivers. Connect with others who are affected by LVADs, make some new friends, and discuss issues that are unique to the LVAD world. There are multiple ways that you can join the meeting. Choose one...
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Jerome M.
Recipient Support

LVAD & ICD

Last activity 3 years 10 months
I have an ICD as well as my LVAD. Can the two affect each other. I had three alarms on my control unit but I felt like I do before getting a shock. I am interested in knowing if anyone else is having this outcome ?
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Nancy G.
Recipient Support

I just got an LVAD

Last activity 2 years 3 months
Was in Hospital 4 months, after LVAD, doing OK but walking is very hard yet, how long dose it take to walk again ?
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Carolann A.
Recipient Support

New LVAD person soon

Last activity 4 years 6 months
Going to have a right heart cat done, and was told to pack my bags, went to go see the heart Doctor, ; Dr. Andrew Sauer, sounds want to stay for a while and that my kidneys are starting to shut down, has anyone been through something like before? New and a little unsure and just a little bit afraid...
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Carol D.
Recipient Support

LVAD Clothing

Last activity 4 years 7 months
To anyone interested if you have a "Heartmate 2", You can find a very comfortable undershirt to wear to carry you equipment under your clothing @ www.lvadshirt.com. It comes in Black or White with a short sleeve, or sleeveless. They have a fit for Men and Women. Shipping time is quick For those with...
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Arthur B.
Recipient Support

Fluid Around the Pump

Last activity 4 years 9 months
Hi, I have had my Lvad for seven years. Recently I have developed fluid around the pump they removed one and 1/3 liters by aspiration however after a month it came back. I have had a surgery done at Tufts New England Medical Center in Boston but the procedure was not successful and two months later...
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Profile picture for user acura
Pat A.
Recipient Support

If you need some supplies for a heartmate 2

Last activity 4 years 9 months
My husband had a heart transplant . He had a LVAD : Heartmate 2.We are located in Massachusetts . In Middlesex county . If you need driveline kits we have then to give if you are in need. Please Email me and we will make a connection acura1234567@aol.com. God bless.
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Maurice S.
Recipient Support

Need New Program

Last activity 2 years 3 months
Wife was implanted 3 yrs ago with heartmate 2 and has since had 3 drive-line revisions due to infection. We have been told transplant is not a option and have been forwarded to palliative care. We have been commuting from Kansas City to STL sfor care, but this has drained all our resources and...
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Profile picture for user JDStratton
John S.
Recipient Support

Reduce Driveline Infections

Last activity 4 years 10 months
I'm so proud of the Freedom Undervest because it solves a real problem. As many of my colleagues know, driveline infections are a serious risk for LVAD patients, and the Freedom Undervest addresses their need to protect the driveline exit site. Read more: https://medi-materials.com/2018/03/28/no...
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robert W.
Recipient Support

pump noise

Last activity 4 years 10 months
Hello I am a new lvad recipient, I had my surgery on september 19 . Everything seems to be going well except for the fact that i can hear the pump running . It is very annoying and I was wondering if anyone else has this issue?
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Topics

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Most Commented

Where are the recent posts, I am scared!!
203 replies
HeartMate III Mens Clothing
108 replies
My Wife Made Me a Wonderful LVAD Vest! Email us…
78 replies
Shower Protection
75 replies
9 years today (20th Oct 2020) living with LVAD
74 replies

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Most Viewed

My Wife Made Me a Wonderful LVAD Vest! Email us…
61,671 views
Discouraged
50,813 views
LVAD supplies--- Who supplies them for you ?
50,409 views
Attitude is Everything
49,518 views
Tactile holster T shirt for carrying LVAD items
43,417 views

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Facebook Groups

  • MyLVAD
    MyLVAD
    1892+ likes
    The Facebook Group for MyLVAD, the leading resource for LVAD patients and their loved ones.
  • LVAD Connection
    LVAD Connection
    566+ likes
    Creating a personal link between LVADers,and their caregivers, with others in the same situation in there own area. A place to post your information so others can connect with you.
  • LVAD Recipients
    LVAD Recipients
    2722+ likes
    Created by Kathy & Ron Spotts of PA. Ron is LVAD recipient August 2008.

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