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Jessica B. Caregiver

Trauma around driveline @ 5 days post-op!!!

My husband received his Heartware lvad on Oct 1, 2020. (Stemi heart attack Aug 4, 2020) Monday, (10/5/2020), two nurses & my hubby set off out to walk a few 'laps' around the cicu wing. Having previously walked behind a different 3some on Sat & Sun, rolling his chair directly behind them in case he got tired or dizzy & needed to sit, I KNOW the laps CAN be done & I KNOW they can be done safely. But, as I arrive on Monday, I learn that the lvad bag was just sat on the armrest of the tall walking apparatus, and as they round the corner, IT FALLS OFF!!!! WHAT THE @#%#!!! It jerks the driveline, 1 of 2 safety holders of the line failed, the site immediately starts seeping clearish watery liquid. The stitches were nice & tidy. Today, Tues 10/6, the stitches are no longer tidy, we're up to 4 dressing changes today with an ever expanding bandage thickness, the area is now swollen & uneven between the stitches,  and it's got redness the driveline, my hubby has pains now around the site, more pain with any movement/dressing changes.  I am so pissed! I am so disappointed! But, beyond that,  I'm so utterly frightened of what could happen now as a consequence resulting from either a lack of detail or even simple oversight from the 2 individuals... of which I put my trust in their ability to be proficient & responsible, taking good care of the love of my life. And, now...what if? The worry of what may happen now... I'm devastated. I don't want to wait and see how bad the trauma to his driveline could be.  I want to attack any potential infection before it gets "bad". I want to be proactive. Only, I'm new to this, and I've got no idea how to be proactive. Is there anything that I can do or anything we should ask our lvad team to do? Meanwhile...back on the farm...my pitbull puppy & I will try to keep positive...and we will try to resist biting someone's face off! =] 
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Matthew B.

As I get ready for my LVAD surgery next week this is tough to read. Cant seem to trust even the ones put in charge of being the experts and responsible for your care these days. I will tell my wife to keep extra close eye on me when I go for walks. Where is your husband at?? I am going to Advent Transplant Hospital in Orlando. 

Sending good thoughts and prayers your way

 

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In reply to by Matthew B.

Jessica B.

...was my response to my husband as he was expressing how unfair this part of the experience has been. Because, we're grown ups and this is the hand we've been dealt. I can't say that this driveline trauma wouldn't have happened once we were discharged & at home. However, my hubby was discharged after his heart attack with a dual PICC line in his right collarbone area, for the milrinone pump that was attached. We had an amazing home health nurse that came to the house to collect blood every 3 or 4 days. If I got nervous, scared, or just had a question, she's who I text or called. She would sometimes answer her phone before I even heard it ring! The milrinone iv bag had to be changed every 72 hours. It took six 'C' batteries, that would last a day & a half or so. It also had a cord that plugs into the wall, and a bag to carry it in, also heavy. Once a day, in the available side of the PICC line, I'd give one prepackaged syringe of saline and one prepackaged syringe of heparin.  I can say, not once was there trauma or any sign of a potential infection with his milrinone PICC line site. 

Right now, on Oct 11th, his driveline site is still seeping the clear-ish watery stuffs. There's not any pus. It's still red, and the area of red has grown, slightly. The day after the nurse(s) allowed my hubby's vad bag to fall, I took a pic with my phone as they changed the dressing. I wish I would have taken several pics before the driveline was yanked. Normally, lvad dressing changes happens every other day, if everything goes well, so we're getting daily dressing changes. NOW, I take pics like we're at a photo shoot! Lol I take pictures from all different angles, sometimes flash, sometimes not. But, at least now, as each dressing change happens, I've got my tablet out & the previous pics pulled up & ready to compare. (I bluetooth the pics to my tablet so I can see it better) Good thing, too. Because the red area has only grown such a small amount. Just eyeballing it... you can't tell it's bigger. Neither could our lvad dressing nurse. So, I pulled up the pics just to make sure. She agreed, it's larger.

I would suggest that anyone going through this should take plenty of pictures. It's that,  'I'd rather be safe than sorry', thing.

Tell your wife to take pictures! Take pictures of your monitors. The readings on those monitors change so often, and the days run together, so it's hard to know if the numbers are worse or better. There's such a sensory overload, tons of information, a lot of noises, weird beeping, flashing lights, and too many faces!! All those faces have names!! Tell your wife, don't be too hard on herself if she forgets things. It's too much! Tell your wife that it's ok to feel overwhelmed. Take pictures of any & every thing that happened in surgery when you get your lvad. If for nothing else, it makes me feel better to review those pictures just so I can see the tiny milestones or how much better my husband is as we move forward. And, the times that he may be feeling down, I just show him how much better & how far he's already came! And it truly helps when he can see how much progress he's accomplished. 

When I put my post up, it never occurred to me that someone might read it; then tally up their pros & cons list, my post going to the cons for the win, and decide to not get the lvad. And, I hope that doesn't happen. Because, even though this isn't ideal, I am sure that without the lvad, my husband was on his way out of this world.

My husband is in Birmingham @ UAB, just right up the road from ya'll! And, let me just say, other than the unfortunate incident, our entire lvad team has been amazing!! I'm so very glad that my husband has his lvad now. And, I'm very thankful to our team @ UAB for saving my husbands life on 8/4/2020, for getting him strong enough to receive his lvad, for giving us the present, and for renewing our hopefulness. 

Thank you for the thoughts and prayers! We'll be returning some of our own positive thoughts and prayers ya'lls way, through the cosmos! Good luck ya'll! 

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In reply to by Jessica B.

Matthew B.

Unfortunately for us this is not my first open heart surgery, this will be my third; I am only 56. So cards that we are dealt is tough too. But I would not pass up any chance to feel better so when they offered me a chance for LVAD unit I jumped at the chance. I have been thru every major hospital; Mayo, Cleveland Clinic and now Advent they all keep trying to fix me but life still sucks.  I was on the transplant list, but then they found prostate cancer so got kicked off that list. It is a delicate process to treat my cancer with my heart condition so that is challenging as well. I would suggest that you take a permenent marker and outline the red area so you can clearly see if it has grown or not. Nurse should have already done this. 

I will try and keep up with your post, but my journey starts on Monday so not sure when I will be able to get back online again. Maybe when this is all done we can share a dinner together and share war stories. 

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In reply to by Matthew B.

Jessica B.

My husband is only 55! We knew he had high blood pressure since '06, his mother had high blood pressure from high school on. In April '15, major, weird swelling started happening. Alas, CHF. The thing about his heart attack this year, Aug 4th, he didn't know he was having one! There was no tingling or numbness, no feelings of shortness of breath,  no pains in the chest. He said, high up his back, between the shoulder blades, it felt like that he had simply picked something heavy up in the wrong fashion, causing it to Charlie horse for about 10 minutes.  That was it. I checked his heart beat on his Fitbit, checked his oxygen w/finger pulse- oximeter, checked his blood pressure with the Omron machine...all seemed in order until TEN hours later when he was heading to the bathroom and fell, and started talking nonsensical. The 10 hrs is what did the most damage. I can't imagine the worrying that your wife & yourself have/are going through.  My hats off to ya'll. Good luck to ya'll both tomorrow! My husband's surgery was slotted to take 8 to 12 hrs, but he was out of surgery & in post anesthesia at 4 1/2 hrs. Though he was intubated until the following morning. He also was nauseous from 3 -6 days post-op & vomited, but that settled & left. Now, we're battling too much fluid retention and tell your wife to keep her eye on it, if you start to increase with swelling as my husband did, if your kidneys can take it, tell her to insist on an iv drip of lasix or some sort asap. I wish I would have bc my hubby would be way more mobile and comfortable than he is now with fluid restrictions and that heart failure coughing when there's too much fluid buildup. 

War stories & dinner sounds good. 

& thanks for the marker idea! I'm going to try that! 

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In reply to by Matthew B.

Deborah C.

Hi Matthew B,  My husband had his LVAD surgery at Advent Transplant in Orlando. The doctors there are excellent and the nursing staff is very caring. You're going to do great. My husband had complications 2 weeks after his initial surgery as a blood clot formed and was pressing on his aorta. He had a second open heart surgery and they fixed the issue. His recovery took 3 months at the hospital after having 2 open heart surgeries in 2 weeks. Once he was home he did great. He received great care at Advent.