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Jodi R. Family Member

Pain at drive line site

My husband has had his Heartmate 3 for almost a year now.  He has days where he gets a stinging pain at the drive line site.  We have not been able to get an explanation for this.

Has anyone else experienced this, know what causes this, or how to eliminate it?

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Ted S.

I only feel stinging sometimes during dressing change. Probably due to cleaning entry area.

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Todd J.

I'm going trough the same as your husband. My wife took a picture of my site and we notice a blister. We're not sure if it's the rubbing of the line or the cleaning agent. I was allergic to chlorohexidine, so now I can only tolerate betadine. Hopefully I'm not getting a reaction from the betadine now. I recommend taking a photo so that you can look a little closer to see if there's any irritation or blistering. Right now the only solution for us is to reposition the driveling off of the irritated area.

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In reply to by Todd J.

Derrick W.

Hey Todd be careful with that i for the first time had the same pain and i could not figure it out. All the while it was a driveline infection. Went to the infectious disease doctor and it was all cleared up but i remember the pain and the blister all to well

 

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In reply to by Derrick W.

Todd J.

Derrick, was the blister near the site entrance or further out? Mine was was about an inch from the site entrance. Since we moved the line the blister has went away.  Besides the blistering were you experiencing any other systems pertaining to drive line infections? Also was antibiotics the remedy? I'm lucky, my wife's a nurse. I don't mean to interrogate you. I just want to relay the information you give me to the wife so that we can make a decision on how to proceed.

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In reply to by Todd J.

Derrick W.

Hey Todd I am SO SORRY for getting back to you this late. Yes it was cleared up with antibiotics but it took two kinds. The first one was not strong enough but the second one was just right. This last antibiotics was good but it would be hard on my kidneys so as soon as it cleared up, I was off of them. I hope yours has cleared up by now. Again I am sorry for taking so long.
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In reply to by Derrick W.

Todd J.

Derrick,

Thanks for getting back to me. I'm doing fine now. I  had the team look at my sight and they didn't see anything they thought could be an infection. However, they felt my line was being pulled, so they sent a waist band of sorts to further secure it. Once again thanks for responding and good luck on your journey.

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John L.

My dad has a similar issue. He has a near constant itching/stinging even though his dressing site looks perfectly clean. We have tried so many remedies and talked with the doctor numerous times about the issue and have come up with nothing that solves it so far. 

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Tonya E.

I have the same issue, and i felt like i was going crazy. I would explain it to my doctors, and they were like they didnt see anything wrong with the site. Has anyone found a way to fight this?

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In reply to by Tonya E.

John L.

We actually just spoke with our doctor about it yesterday and he finally determined that it is nerve damage from the initial procedure and will eventually go away. He prescribed a medication called Gabapentin and for the first time in months my dad was able to get a full night's sleep. The drug is used to treat seizures and nerve disorders. 

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In reply to by John L.

Jodi R.

My husband is also on gabapentin and Tylenol.  It is making it ‘tolerable’

John- how long ago was your dad’s LVad put in? My husband is at the 1 year mark and still dealing with this.  He does have a mild staph infection in that area which is on the skin only.  Not sure if that is part of the problem. 

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In reply to by Jodi R.

Tonya E.

Hi Jodi, 

I am also on gabapentin and tylenol . And it's still not tolerable.  I had my lvad surgery Nov. Of last year. Honestly the only time it truly hurts  is when i bend over or sit down. Does your husband have the same problem? 

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Brittney M.

My mom has been having pain as well, implanted December 3, 2019..... Last month, while doing her dressing change I noticed feeling something hard at the site. She has a Heartware. Called the VAD Emergency team, they said it was probably a piece of the line (some white piece), which I remember being taught about, but you don't see anything. They don't believe it's infection. I'm not totally convinced of anything. 

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Debra K.

Hi

I'm Lvad 4/1/2016... if your husband doesn't have any abnormalities around the site, theres a chance that you need to flush with sterile water instead of the wand in your lvad dressing kits. I've been experiencing pain from the line rubbing on the surrounding area. I alternate the chloraprep wand and sterile water syringe. Hope this helps✌🐝safe

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Cynthia S.

Is this at the site entrance or along the whole driveline. I have pain that wakes me up at night. The driveline is arched up under my skin. It is very painful.

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James B.

I have it 13 mouths. It's was great till about 2 mouth ago.  I have a rash. It's not inf it's was red where the patch was.  The I took my shirt of. I stay inside. It's clear up to air hit it.  (. With the banged ON )  it's clear up. The the other day. It's was good. Look like skin  the next day it's inches and sore and burning  my wife change it. It's red again. There was a very very small blood   like a pin head.  The Dr said it good.