My LVAD experience so far:

It sounds like things have gone well for you!  My husband started evaluations in April 2019 and finally got approved for his LVAD in November 2019. He had his surgery the day before Thanksgiving and as of December 19 is still in the ICU on a ventilator and cannot get out of bed on his own yet, let alone make posts on the Internet.

I hope your recovery continues to go well and that your LVAD proves to significantly improve your life, which is also my hope for my husband.  God Bless and Happy Holidays (whichever ones you celebrate!).

Congrats on the recent successful implant! Your story sounds similar to my moms, as far as several complications..... Apparently, as I was told by one of the nurses pre-op, this is par for the course with this surgery.... Wishing you all the best and all the support, strength and determination you need to make it through this. 

Two years ago we were involved in a car accident.  We were not at fault. However my husbands Lvad bag fell and it pull his drive line.  We left the accident and went home.  Next day when we changed his bandage on his driveline we realized there was a lot of blood and discharge we went right to the er but it was to late. He had a full blown infection.  This infection never cleared up and my husband was so very sick for many months and in a lot of pain.  He passed away in peace and without any more suffering. I tell you this to warn you to protect your driveline. You do not want to ever get an infection. Stay safe protect your driveline.  Stay sterile. If you have any trams. Go straight to the hospital.  God bless and keep you all safe

Hi, Dick. I got an LVAD about 5 years ago and am doing well. Like you, I had trouble with fluid in my lungs for a few weeks, but it slowly cleared up. Open-heart surgery is pretty major, so problems with the surgery are not uncommon. 

But since they have cleared up, the only problems I've had have been with the warfarin. I've had some strokes (none serious) and lots of bleeding problems, but compared to dying, they are pretty minor stuff. Take good care of your controller. Keep it firmly attached to your body so it doesn't yank on your drive line. Protect your drive line to keep it from being pulled; I keep most of mine under my shirt, with only a few inches exposed at the controller. The most serious problem facing you is an infection, and they usually come from a drive line being pulled loose from the insertion site. 

My LVAD has given my five years of life I wouldn't have had without it, and I'm very grateful for that time. Hopefully, I have many years ahead of me yet and intend to enjoy all of it.

Hello Dick,

Every day things will get better as you continue to heal. I’ve had my HM3 for over 3 years now without any problems. Like what has already been said, protect your driveline at all cost! Driveline infections are the biggest problem most people will ever have and the majority of them are caused by trauma to the driveline. Whenever I go out of the house I never carry my equipment in the bag. I usually wear cargo pants or shorts and put my equipment in the pockets. I cinch the cables together with a Velcro tie and loop it through a belt loop. Once my shirt is pulled back down maybe only 4 inches of driveline and cables can be seen. This really cuts down on the possibility of getting them snagged on anything. I play golf, wash the vehicles, mow the yard and shower every morning. The only thing that can hold you back is yourself.enjoy your second chance, I know I am.

  I received my LVAD on 12/19/18 and was home on Christmas Eve! Good Luck 

I appreciate all the insights about protecting the driveline.  This is excellent information!  JoyceT, I am so sorry to hear that your husband has passed.  Thank you for sharing his story; it may save someone else from suffering as he did!

Hey Michelle,

he is going to be fine.   I think age has much to do with it .   Did you say his a a destination LVAD?  Happy New Year.  
susan

Ok that makes sense.

hey everyone thank for the input about lvads had mine done at u penn sept26 2019 got out of rehab day before halloween feel good but i was laying in bed for so long my back and leg need work otherwise i'm good my family bought me some vad shirts so i don't need to carry the bag all the time they are great

My husband has an LVAD. He also takes warfarin (he had three stokes). He bleeds sometimes from the penis. Has anyone had this problem. The bleeding isn't a lot but he won't discuss it with the doctor. I'm his caregiver and I don't know what to do or say about this. He has had his LVAD since 2017. He is waiting on a heart transplant. Tonight he went to bed worried because of the small amount of blood.

Has anyone experienced a magnet sticking to your stomach?  For a Christmas gift I received a magnetic toy and I laid it down,  and noticed that it sticks to my stomach. I'm thinking this is probably not a good thing...

Hi Gustav, congratulations!!! I’ve never heard that we could stay so long with the LVAD!!! I had mine in August 2015, and had to change the pump in December 2015. After two years of very bad clinical conditions, I am fine in the last two years, leaving almost a “normal “ life. Your info of 12 years leaving with LVAD gave me new hope that it’s possible to go ahead with quality of life. I am still afraid for traveling. I do not know if the flight companies accept well here in Brazil. We are very few LVAD users, just 4 in Rio de Janeiro, but I hope to get courage to travel to visit my son in New York once this year.

Hope you keep doing well! 

Happy new year for all of the LVAD users. 

Mariza

I've had my lvad for over 2 yrs. I just had a blood clot in my heart. They had to replace my my whole machine in my heart. So any changes in your body tell your team. The only way I knew something was wrong, my urine was full of blood. I was in the er in 20 min. I was in clinic on Tuesday, this happened on Thursday.  

I've had my lvad for over 2 yrs. I just had a blood clot in my heart. They had to replace my my whole machine in my heart. So any changes in your body tell your team. The only way I knew something was wrong, my urine was full of blood. I was in the er in 20 min. I was in clinic on Tuesday, this happened on Thursday.  

Hello, My husband had the Heartmate 3 implanted in early Sept., here in Phoenix.  We are looking to travel home on an airplane and then will need to make trips back for checkups. I’m wondering if anyone has advice for types of protective cases for the charger and mobile power unit? What case and supplies have you used for storage overhead?  Did you just get a big pelican case and they allowed that on the plane? Thank you