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Dick T. Prospective Patient

My LVAD experience so far:

Hi all!! My name is Dick. I was just reminded that I joined this forum 15 days ago.   Here is my story so far. 

I went to the hospital on the Tuesday before Thanksgiving to get the evaluations and approvals done.  I was supposed to return the following week and have the LVAD installed if all went well. As it turns out I’m still here on 12/16 and trying to get home by Xmas. During my evaluation several abscess teeth were found so I stayed here and go them taken care of and not delay the surgery date. Besides having the LVAD installed I needed to have a bi-cuspid valve replaced and the aorta repaired due to an anureysm that is hereditary among  males in our family.   Surgery went well but small complications keep popping up. Am now out of ICU with a new heart mate 3 and am supposed to be moved t an in-house re-Han this afternoon. However, this mornings X-ray shows fluid on my lung causing shortness of breath. They’re trying to put together a team and have it drained. The device works well and is simple to monitor. I’m still hopeful of leaving here for home on Friday. 

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Michelle T.

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!).

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In reply to by Michelle T.

Dick T.

I hope that things improve for your husband.   I’m still going to be here through Christmas and New Year but it’s because of other complications. 

Wishing you and your husband well and will send prayers your way. 

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In reply to by Michelle T.

Barry and Susan (caregiver) S.

Michelle, how is your husband doing?  Do you mind if I ask you a couple of questions?   Like where did he have his surgery and how old is he?

my husband I 74 and has had his LVAD for 3 years.  We winter in Arizona an we’re there since Oct.  but my husband LVAD malfunctioned and we were able to go to the PHOENIX Mayo and they had been seeing us.  They said that my husbands pump needed to be replaced.  We could have had it done in Phoenix but chose to return to Rochester Mayo so we were closer to family .  He had his surgery Dec. 17 2019 and was discharged Dec. 24th 2019.  
They did not have to go through the sternum for the one because all of his plumbing for the LVAD was there of course.   These surgeon are amazing, we are so grateful.   He has some recovery ahead of us though, but did it once, we will do it again.  
Hope all goes well ahead of you both.

Happy New Year🎉😇

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In reply to by Barry and Susa…

Michelle T.

Hi Susan!  He recognized his son last night, which was a HUGE improvement.  He also asked for his phone, but couldn't remember how to use it.  I didn't leave it with him because I didn't want him to accidentally buy Amazon or something.   ;)   He's almost 61 years old and he's at Tampa General Hospital (Florida).  They have an EXCELLENT program and I do trust them.  It's just scary seeing things not go quite the way we had expected them to go.  I'm sorry to hear your husband needed a new pump but it's a relief to hear that doesn't require breaking the sternum again--I had wondered about that!  I hope your hubby is doing well.

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In reply to by Barry and Susa…

Gustav S.

Hi Susan-

Glad to hear the replacement went well. I too live in AZ, Sun City West, and have had my LVAD for 12 years as of this Friday.  I was 68 when implanted and, according to the doctors, I had between 2 weeks and 2 months left.  I was #5 in the clinical trial at Mayo Phoenix, and other than getting older and slowing down a little, life has been good.  My wife and I have traveled all over the world, cruised several times and still enjoy life.  I was playing golf until about 2 years ago when I fell and injured my right shoulder.  Haven't been able to play since then!!  I also sing in the church choir and a 90 vice mixed chorus here in SCW, the Westernaires.  There are 4 of us destination types here in SCW, so when you get back, let me know so we can meet up.  Best of luck to you and your husband - and keep fighting!!

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In reply to by Gustav S.

Barry and Susan (caregiver) S.


Gustav S

We have bought tickets to return to SCW on Feb. 3.  Barry should be pretty close to full recovery.  He needs to get back to dry warmer weather and get busy walking outside.  He gave up golf because he has always felt uneasy with his balance, and is concerned about falling .  He loved it, golf while we were living in Rapid City, SD. almost everyday.  We would love to connect when we get back, if that’s ok.   Our # is 605-381-4814.  
His problem which is common is fluid Retailmenot.   Doctors doubled up his diuretics , when he looses a few pounds we are going back to Mayo Rochester for a CT scan to see how he is.  
Take care, Susan and Barry S

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Brittney M.

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. 

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In reply to by Dick T.

Brittney M.

My mom is doing better thank you. Physically, she still has rough days, but mentally, she has been put on meds to help with depression. Over the past week, they seem to be working. 

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Joyce T.

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

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MIke S.

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.

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In reply to by MIke S.

Dick T.

It’s super encouraging to hear a story like yours. I hope to get another 5 years or more from this one. I’m hoping to get an infection from my feeding tube cleared up and swallowing problem corrected soon. Then I can get started on the rest of my life. 

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Larry B.

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.

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In reply to by Larry B.

Dick T.

Great ideas!  I told my son I plan to be back on the golf course this spring. It’s good to hear your doing normal things like mowing grass and washing vehicles. Looking forward to it

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Michelle T.

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!

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Barry and Susan (caregiver) S.

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

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donald e.

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

 

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Edith W.

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.

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Russell R.

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...

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Mariza M.

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

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In reply to by Mariza M.

Barry and Susan (caregiver) S.

Hi Mariza

my husband had his pump for going on three years and his wiring failed.  He had his pump exchanged in Mayo , Rochester, Mn. 3 weeks ago and is having much pain and retaining water , having a hard time breathing.  He can’t have many pain meds, did try Oxy, but that is bad stuff.  He is getting some relief from Lidocaine pads and cyclobenzaprine.  Hard to get through the night.  His site for the pump tubing is leaking continuously .  It is a journey , but we will get there.

Susan

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Connie W.

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.  

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Connie W.

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.