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Research A. Recipient

Would you like to join an important study about your experience of living with a Left Ventricular Assist Device (LVAD)?

Wed, 01/23/2019 - 11:00AM

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837 reads
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John I.

Sat, 01/26/2019 - 8:09PM

My name is John.  I was diagnosed with CHF in 2012. In 2013 I completed P90X twice and was in the best shape of my life.  Had several medical relapses over the years and received my LVAD in March of 2017.  Currently also have a PICC line. 

I am reaching out for guidance or others in the same situation, what excersices work well yet accommodate the medical limitations?  Is there anybody looking for a workout buddy in the DE area?

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Lisa L.

Mon, 09/16/2019 - 11:54AM

 Hello everyone, my name is Lisa Harmon Long and I am a patient living with the HeartWare Lvad. Since I am destination therapy,  I wanted to come up with something to make my life easier and make me look and feel normal or “whatever normal means LOL😁  while in public .

So , I invented a fashionable medical device cover for the HeartWare  and HeartMate Lvad. We currently have the HeartWare available in stock now,  and will be offering the HeartMate covers  very soon. We will be making different designs for men,  women and children very soon .

These are high-quality covers  made from the best materials , all handcrafted. These will be sold in a three-piece kit with a Bag and Strap cover,  and a new comfy Shoulder Pad   . Here is the website and a sneak peek at the video and some future items that will be available soon. These patent pending items are life-changing and I just wanted to offer them to my Lvad  family as an option. Have a blessed day

Lisa Harmon Long

www.lvadskins.com

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Karen T.

Mon, 11/11/2019 - 10:26AM

My husband has had his heartmate 3 since Sept 2018, he still has bouts when his legs just want to give way on him and also he gets dizziness at times, does anyone else have these issues after 1 year, please tell us what you did, our LVAD team is the best but they have done changes to meds, fluid intake and nothing helps,  hes 73 and I'm 69 and being a caregiver is hard work, I need some answers with reasurrance this will get better, thanks for listening 

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Connie W.

Tue, 11/19/2019 - 5:24PM

Have your doctors check his meds again. As for a caretaker you should find a program that offers help. It will give you a break. It's hard to be the only one. Ask your coordinator for ideas of where to go. The insurance should cover it. God bless

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Susan S.

Wed, 11/20/2019 - 9:38AM

Our ages are about the same a few years older.  Barry has had the Lvad HM 2 for 3 years.  It’s a journey and he still has a hard time walking without fear of falling.  As a care taker just be there and help however you can.  Lvad team said “you are both getting a Lvad”.  We take walks when he feels  comfortable.   He exercises at the gym , mostly using the low riding bike it is a comfortable and secure way to strengthen his legs and core.  The leg press is another one that is helpful.  Has he ever had a trainer or Physical Therapist?  Is his Lvad destination ?  Barry’s is.  Too old for transplant.  I hope some of this helps, it does get more comfortable.😇  

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Susan S.

Mon, 12/23/2019 - 2:13PM

We are in  Sun City West for the winter, and use Mayo in Phoenix for my husbands LVAD continued care while we are there.  
My husbands alarm went off after we both went to bed.  I went to his bedside and noticed he was not breathing.  I called the LVAD EMERGENCY # and was immediately connected.  I started to explain the situation and noticed his C-pap nose pillows were in his mouth, I removed them and put them on his nose, then hit his chest.   He came to and was responding to me.  The nurse on the phone said bring him into emergency, my son was not far so he drove us.   I was not in any condition to drive.  Upon arriving it was determined he had a wiring failure and admitted him.   Further test determine it was not in the outside driveline but interior.  When he is on batteries he is non-grounded and to some degree safe.  They also put him on the non-grounded portable wall monitor.  A team determine the pump needed to be replaced.  
We flew to Rochester Mayo to have the surgery to be closer to family.  The surgery was successful and we are very fortunate for the talented surgeon , Dr Stulak and his team.  His recovery has been much shorter being that they did not have to go through the sternum again.  He has a ways to go but the surgery was 12/17/2019 and we may be going home 12/24/2019.  Say prayers for us and others that experience problems.  It’s a different life , but one we will accept.
 

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Karla L.

Wed, 03/04/2020 - 11:40PM

I’m my Mother’s caregiver. She received her LVAD September 10th, 2018!!!  Her alarm sounded yesterday morning & was taken by ambulance to ER. It was determined she has a clot inside her heart ware LVAD!... She had to stop blood thinners 9 months ago after having multiple scary bleed out episodes. She is being closely monitored in the ICU . Her RPM is between 1.7-2.4 . She is getting a heparin drip to stop the clot from getting bigger. She is getting a heart mate 3 early next week. This scares me so much as she had a long 6 month hospital stay / recovery post her 1st LVAD.

it is nice to hear success stories of others who have received a 2nd LVAD! 
Thank You for sharing.

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David A.

Wed, 02/05/2020 - 2:02AM

Hi Karen I'm into my 4th year of my lvad unfortunately I've been experiencing a lot of dizzy spells mainly due to BP I've stopped taking the tablets and on the 2nd day was feeling much better 

Thanks David

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Anthony V.

Mon, 11/11/2019 - 2:21PM
yes I want to join your survey about my lvadd
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Anthony V.

Mon, 11/11/2019 - 2:26PM
ive been searching for an lvadd heart mate 3 support group that meets periodically . I have not had success, ive had my lvadd for 3 years now and im on the transplant list , I own my own plumbing co and work almost everyday id love to meet with people with my same health issue I live in Vernon ct if anyone knows of a group that meets off line in the area please inform me my drs don't thks tony
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Chris G.

Mon, 11/18/2019 - 3:51PM

I had a heart mate 3 lvad for two years and then got my heart transplant 9/19/19. I have a shower bag, kits, batteries and charger.  Who is interested?? I would like to send it to someone in need. God bless everyone 

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Chris G.

Mon, 11/18/2019 - 3:52PM

I had a heart mate 3 lvad for two years and then got my heart transplant 9/19/19. I have a shower bag, kits, batteries and charger.  Who is interested?? I would like to send it to someone in need. God bless everyone 

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Juanita P.

Wed, 02/05/2020 - 12:42PM

Can you advise what the study is.  Thank you...

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Steven H.

Mon, 03/23/2020 - 2:26PM

I Know there are many ways to carry LVAD’s. 
I have used different vest with pockets on the inside to help carry the batteries and the Heart Ware. 
Not long ago I was in a Bass Pro Shop and cane across a bag that straps to ur waist. Like a fanny pack but a little larger. 
I really liked the way this carried around my waist. Thus  one was camouflage which didn’t matter to me as I like to hunt. 
But I went on Amazon and bought three more with more pockets (for bandages) or what not. 
The Heart Ware and batteries go in then it zips up with only the drive line coming out the corner.  
if anyone is interested in this. The size of the pack is 11x5x6.