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Katie P. Caregiver

Younger VAD Couple

Hello everyone! My husband is getting the LVAD this Friday. We knew about his heart failure but getting the VAD this early was a surprise, his condition has declined quickly. I'm nervous about a lot of things but would love advice from younger couples/families (older couples too if you have advice!). Any and all advice welcomed for:

  • Having a toddler and expecting a baby: interacting with kids, teaching them not to touch, how can my husband still play and rough house with little boys etc
  • New baby and LVAD???
  • Sex!? We are young and no one can seem to help us figure out how we can continue a healthy physical relationship. I'm assuming we will figure it out but will still love advice.
  • Family outings. We are active and love being active with our family and their young kids, any advice with parks, zoos, water parks, beach days etc.

I just want my husband to be able to enjoy as much as he can that makes him happy now. Thanks everyone! I'm sure I am being over anxious!

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Christine L.

Well, I'm not young, but I have had my LVAD for 7-1/2 years now.  When I was first implanted, our grandson was 6 months old--and a huge incentive for me to recover so that I could get to know him and spend time with him.  We actually live 3 blocks away from him now.  I find that young children accept and learn about medical conditions better than most adults.  Once they learn not to splash water on their Dad and not to pull the driveline, they will be anxious to help with changing batteries, checking the amount of power left in the batteries and even help with medical tests.  

Once your husband has recovered and is back to "normal" (a new normal, to be sure), life can continue as it was.  He can do as much as he feels comfortable doing.  I have been to and enjoyed all of the places you mention, although I can't participate in the water activities, just watch and provide commentary and towels.  We have traveled by car and airplane, gone on cruises, are active in our LVAD support group, and enjoy life.  It's not all a bed of roses, but it's a time to treasure.  You two and your children will explore what your life becomes after your husband receives his LVAD, so make the most of it and try not to be afraid.

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Julia K.

Hello.  At this point I'm sure you're overwhelmed, as I was, when my husband received his LVAD 5 years ago.  Trust me, you'll learn to live a normal life as a couple and parents and get over the frustration (it's better than losing him, isn't it). 

I'd first of all recommend getting rid of the nylon sling that he'll be wearing and purchasing 2 or 3 specialized LVAD shirts.  That will eliminate his drivelines catching on things and enable him to play with his children.  This is by far our favorite: https://medi-materials.com/ .   He will have all three medical items snug up next to his body and with a size larger shirt over it he'll look totally normal.  We've tried dozens of things and this works by far the best. 

The only thing my husband had to give up was swimming for obvious reasons.  Family outings are fine but his heart won't beat faster so I'd rent a motorized scooter or a Rascal if you're walking outside a lot, it's very hot or there's uphill trails.  We just spent two days at Colonial Williamsburg and two days walking all over Manhattan with our daughter (no problems at all). 

As for sex -- this is very important because if you aren't intimate then you just become the "caregiver" and not so much the "wife".  Sex is easier if you're on top and he's underneath.  If you hear the unit during sex it means nothing.  He's just having fun :) . Definitely try new positions and fun things for sex.  If something doesn't work, try something else and later retry things you've tried before -- his body will be healing and each month will be better.  Our cardiologist told us about a couple that had a baby 11 months after the husband's LVAD surgery :)

When he's cleared to shower, we have a nice hand-held shower head and he places the SHOWER SHIELD brand adhesive over the unit and we shower together.  It's very intimate and we've used fun shower gels, scrubby mitts, fancy shampoos, etc to make it a spa experience that we enjoy daily.  I'd recommend you google LVAD clothing and always be looking for a better item for him.  Don't give up!  My husband just got an LVAD Sleeping Belt for his birthday and he loves it.  

Don't listen to the negative people around that tell you horrible stories.  Some of these people will be nurses.  Just get a good LVAD doctor and listen to your coordinator.  My toughest moments were when nurses told me heart-breaking lies that didn't really apply to my husband at all.  My husband was in cardiac rehab and doing great, but one of the nurses commented how well he was doing and then said "Just so you know -- he'll die when you least expect it"!!!!!!  I cried for days.  My husband has had no issues with his LVAD and took himself off of the heart transplant list because the LVAD is truly a wonder device!

 

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Marli L.

Hi Katie

im new to this forum. If you see this, Id love to get in touch. My husband just got an LVAD a few weeks after his 34 birthday.

My Facebook is Marli Lichtman - probably easiest way to get in touch.

 

 

 

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Cathie W.

I saw people recommending the LVAD shirts.  My husband despised them.  Being a younger, formerly athletic guy, he decided to use a football girdle instead.  You can get them on Amazon - the kind without the pads, just the pockets for the pads.  The batteries go in the pockets.  This way, all the equipment will be much more hidden, even the controller, not to mention much more comfortable... and way cheaper!  the tradeoff is no skinny jeans...  

https://smile.amazon.com/Under-Armour-Football-Pocket-Graphite/dp/B07CZJ6SLM/ref=sr_1_6?dchild=1&keywords=football+girdle+for+men&qid=1595504706&sr=8-6

Best of luck to you both.

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Jim C.

It’s a huge life change, things will be different for you both. Stay cognizant of the wires( I have a young grandson and he finds them interesting!). Once you get the ok, intimacy is fairly normal with the exception of low flow alarms(no one has been able to tell us why or what to do). Enjoy each day as god has give you and your spouse an extension on life,be patient 

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Bob B.

Question-I just received the football girdle and it works fine. Do you put the batteries in the side/hip pockets or the knee pad pockets. Also where do you put the controller, right now that bad boy is sitting atop my privates ( I’m 73 years old and will be sterile in a year, which is no problem). We already have 6 children. I too am a former athlete, played 4 sports in high school and football in college. These girdles are nothing like I ever wore. The LVAD shirts were not comfortable and put all of the weight on my neck and shoulders. Any suggestions on which pockets to use would be appreciated..Thanks, Bob

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In reply to by Bob B.

Larry B.

You turn the girdle inside out and put your batteries in the thigh pad slot and I use to put my controller in the right hip pad slot. These were really uncomfortable to me so I started putting my batteries in my cargo shorts/pants and the controller in the cargo pocket. Works better for me at least. I used some Velcro ties to cinch the cords up and secure to a belt loop. These were ok but still put all of the weight below the waist. The best solution for me at least was doing a search on Amazon for multi pocket travel vest. I have about a half dz of them that I use now, both summer and winter versions. About $35 ea on Amazon. All of mine have inside pockets for both the batteries and the controller. Not pumping Amazon by any means but their free return policy is great. I use these vest for almost every occasion now. I even play golf in them. Here’s one of the ones I have https://www.amazon.com/LUSI-MADAM-Poplin-Outdoors-Pockets/dp/B01LFA3O6A/ref=sr_1_6?dchild=1&keywords=Multi+pocket+travel+vest&qid=1615221456&sr=8-6