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Larry G. Recipient

Ongoing scabs driveline

Just wondering if anyone else have ongoing scabs around the drive line my doctor says the site looks good no infections and it would never heal because no matter how secure the line is it still moves. Had my lvad since Aug 2018 doing well  even went to my winter camp for ice fishing and my inverter generator worked the battery charger and a.c. power cord.

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Larry B.

True story on never actually healing. No big deal. Mine always has a little crust around the entry site. Got mine in Oct 16 and not even a hint of an infection yet and I'm pretty active. I play golf and shower every morning and still havent had any problems. 

 

Donald, if you are using the antimocribial dressing nothing other than it should ever come in contact with your exit site.

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In reply to by Donald H.

gail p.

Yes I would like to know about ointment. We have had the lvad since 2012 and never been told about any type of ointment

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Reiss T.

I have had my Heartmate II going on nine years and so far have had no problems with scabs or infections. I credit my wife/caregiver for keeping me problem free by taking meticulous care when doing my weekly after shower dressing change. I have also been fortunate so far in not snagging or dislodging the driveline causing it to bleed. Can't agree with your doc on this one.

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In reply to by Reiss T.

Anonymous

Could you describe for us how you shower and what kit you use for dressing changes.  I've never known anyone who made 9 years without an infection.  I lasted 1 1/3 years.

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In reply to by Anonymous

Patricia S.

I'm my husband's caregiver. He has had his Heartware LVAD since August 2015 and has never had a driveline infection. I use the overkill approach for the shower. I tape up the area in three ways: using the small ShowerGuard plastic sheet provided in the Post Op driveline kit, I cover the anchor completely and part of the bottom of the bandage, without getting tape on the anchor (makes it easier to take off); use  a large (6"x8") Tegaderm film sheet to cover from above the bandage at top, down to overlap the Post Op ShowerGuard plastic sheet on the bottom; use 2" 3M Transpore plastic tape around the outside of the Tegaderm and ShowerGuard sheets. The bandage and anchor - the whole area - is taped so there is no possibility that water can seep in from anywhere, including sliding down the driveline cable. My husband does not have to be careful about getting water near the driveline bandage because I tape the heck out of it. We use a Post Op dressing by preference.

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In reply to by Anonymous

Patricia S.

It's the dressing that was used in the hospital. Upon release, we were given a different kind of driveline management kit. I asked to use the same one from the hospital, and we've used it ever since. The actual name is VAD Driveline Management Kit, Post Op, by Centurion, Reorder # DT19000. The main difference is the Island Dressing (http://www.centurionmp.com/products/island-dressing/). From Centurion's website: "The Centurion Island Dressing doesn't stick to wounds, because it's made with a highly absorbent, lint-free pad. The dressing is manufactured with a special non-woven fabric that is very flexible, making it very comfortable for patients." Advantages listed, all of which we agree with: 

  • Very easy to apply and remove
  • Non-sensitizing adhesive keeps dressing in place for long wear times (we change my husband's dressing once a week or so)
  • Highly absorbent, lint-free pad does not stick to wounds
  • Fabric "breathes" like skin, and conforms to body's movement

My husband gets no red spots or broken skin from this bandage's adhesive around the edges, and the non-woven fabric is very comfortable for him. 

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In reply to by Anonymous

Steven R.

I’m going on 3 years without a driveline infection. I would make sure I was changing my dressing just like they did at the hospital.  Some people take shortcuts by not using the masks that come with the kits.  Some people don’t use the sterile gloves, instead use the ones that are not packaged.

As far as the shower goes.  I always use a shower shield.  I use a detachable shower head that has about a 4’ hose attached.  I never just let water spray on the shower shield.  I stand with my back towards the front of the shower and underneath the shower head.  I like using a scrunchy to apply soap. It doesn’t hold water.  I can let go of the shower head and let it dangle down while I lather up.  Then rinse off.  Ok I don’t endorse this or recommend it without proper precautions taken.  I’ve never had my LVAD in the shower with me.  I have a bar outside the shower that is secured with screws in the stud.  You can hang from it.  It’s extra sturdy.  I hang my bag with the shoulder strap on the bar.  So my bag hangs right beside me outside the shower just as if I had my wife holding the bag while I showered.  The key is to always take your shower when you have someone available.  I also have a shower seat available in the shower should I need it.

The big key is never to let water get on the driveline next to your stomach.  Clean the driveline cable every time you change dressing.

Hope this was helpful.

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In reply to by Steven R.

Juanita P.

Yes, I've had my LVAD going on three years and I've never had an infection.  I protect it very well, "gold" and my life line.  I too have a handle for the shower and use a chair in the stand up shower, if I need it.  I not only use the thermaguard but also press and seal wrap.  I don't allow the water to hit the bandage and also stand with back to the shower.  I've taken a shower every day since released from the hospital.  As far as the bandage weekly, I go strictly with the sterile way was shown and advised.  I do NOT deviate from that.  I hope this is helpful.  I also, took a risk in getting in the bathtub....The water was not high, just barely covering my legs.  It felt wonderful....No they don't advise and would be extremely careful every now again for me...But was WONDERFUL TO SOAK in a tub after close to three years.   

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In reply to by Steven R.

Juanita P.

Yes, I've had my LVAD going on three years and I've never had an infection.  I protect it very well, "gold" and my life line.  I too have a handle for the shower and use a chair in the stand up shower, if I need it.  I not only use the thermaguard but also press and seal wrap.  I don't allow the water to hit the bandage and also stand with back to the shower.  I've taken a shower every day since released from the hospital.  As far as the bandage weekly, I go strictly with the sterile way was shown and advised.  I do NOT deviate from that.  I hope this is helpful.  I also, took a risk in getting in the bathtub....The water was not high, just barely covering my legs.  It felt wonderful....No they don't advise and would be extremely careful every now again for me...But was WONDERFUL TO SOAK in a tub after close to three years.   

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In reply to by Anonymous

Joaquin R.

Richard b. The nurses never told you what type of dressing to use when you shower I've had my L-vad for about 4 months and they sent me home with supplies and everytime I see my doctor they ask me if i need any dressing kits 

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In reply to by Joaquin R.

Juanita P.

They should have sent you home with a proper bag for the batteries and controller for the shower.  Also supplies I order directly from the company and they send to me door usually within a day or two.  I use the shower thermaguard 7x7 goes over the dressing and I use press and seal wrap around dressing to double coat.  Next time your in the physician's office or call and have them provide you with names and proper covering for the LVAD.   That is informative information they should have provided.  That is something your insurance covers as well.  It is NOT COMING OUT OF THE HOSPITAL'S POCKET.  I've had my LVAD 2 1/2 years now...The company that supplies the weekly dressings are the ones that also carry the thermaguard.  You can also ask the medical supplier what is used for the shower.  They will not just offer suggestions, not sure why....Its your life, your LVAD, and your responsibility to take care of it.  Gain as much information as you can. 

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In reply to by Juanita P.

Susan S.

My husband found that a good brand of Masting tape works very well.  Does not tear skin yet keeps it dry.  Take it off as soon as you get out of the shower.  Barry has had his LVAD Heart Mate ll since Oct.16, 2016.  I am his caregiver.  

Susan

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In reply to by Juanita P.

Susan S.

My husband found that a good brand of Masting tape works very well.  Does not tear skin yet keeps it dry.  Take it off as soon as you get out of the shower.  Barry has had his LVAD Heart Mate ll since Oct.16, 2016.  I am his caregiver.  

Susan

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In reply to by Joaquin R.

Juanita P.

Tell them YES you need kits, take what they have, and also look into the company shipping right to your door...That is what I have and a lot of other LVAD patients.  They have to write a script and upload/fax to medical supply manufacturer....etc.   Hope this is helpful.  Ask as many questions as you need...and if you can, have someone go with you to the visits so they can ask, and retain any information that you may not remember.  

 

Juanita P

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In reply to by Joaquin R.

Juanita P.

Tell them YES you need kits, take what they have, and also look into the company shipping right to your door...That is what I have and a lot of other LVAD patients.  They have to write a script and upload/fax to medical supply manufacturer....etc.   Hope this is helpful.  Ask as many questions as you need...and if you can, have someone go with you to the visits so they can ask, and retain any information that you may not remember.  

 

Juanita P

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In reply to by Joaquin R.

Juanita P.

Tell them YES you need kits, take what they have, and also look into the company shipping right to your door...That is what I have and a lot of other LVAD patients.  They have to write a script and upload/fax to medical supply manufacturer....etc.   Hope this is helpful.  Ask as many questions as you need...and if you can, have someone go with you to the visits so they can ask, and retain any information that you may not remember.  

 

Juanita P

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In reply to by Joaquin R.

Juanita P.

Tell them YES you need kits, take what they have, and also look into the company shipping right to your door...That is what I have and a lot of other LVAD patients.  They have to write a script and upload/fax to medical supply manufacturer....etc.   Hope this is helpful.  Ask as many questions as you need...and if you can, have someone go with you to the visits so they can ask, and retain any information that you may not remember.  

 

Juanita P

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In reply to by Joaquin R.

Juanita P.

Tell them YES you need kits, take what they have, and also look into the company shipping right to your door...That is what I have and a lot of other LVAD patients.  They have to write a script and upload/fax to medical supply manufacturer....etc.   Hope this is helpful.  Ask as many questions as you need...and if you can, have someone go with you to the visits so they can ask, and retain any information that you may not remember.  

 

Juanita P

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In reply to by gail p.

Bobb P.

I have work on and around power system for

most of my career.   Only “Pure Sin-wave generators should be considered!   Most auxiliary generators tend to be electricity noisy and the frequency is dependent on the engine speed which varies with load. You meet one of the newer “Inverter Type” generators. I have had a Honda unit for several years and it’s has provided quiet power    For many years. If you must use an inverter ,  it should also be a pure sine wave unit.  There are many inverters and generators that claim to provide suitable power.      Get reliable help when seeking auxiliary power

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Juanita P.

Hello Everyone, has anyone ever had a tear in the drive line, and if so how did the hospital handle it?  I have a couple small tears in the line, I'm very active, workout etc.  The hospital affiliated with uses flex tape to go around couple times on the drive line.  It doesn't look pretty but covers the small tear.  I am worried that someday here soon, it will need to be replaced...Can anyone share their experience..

 

Thank you. Juanita.

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In reply to by Juanita P.

Doug W.

In my case it was the outer cover of the line between the heartmate3 controller and the connector before the line enters the stomach. All they did was disconnect the line and replace it with a new one. I was only disconnected for a few seconds and I felt nothing. 

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In reply to by Juanita P.

Bobb P.

Yes, I’ve had a couple and the hospital staff had some very thin, strong white tape.  I’ve had a patch for a couple of years and it’s holding up fine.

 

 

 

 

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In reply to by Juanita P.

Debra K.

I have had a tear in my driveline for about 2 years now. My team hasn't said anything about it. I put tape over it and it's fine.  I don't think they can do anything about it. 

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In reply to by Debra K.

Juanita P.

Yes i get that for sure.  I don't think they want to mess with it due to infection risk etc....My medical facility advised that they would change it within a day, but would be a hospital stay in ICU just to make sure no problems.  I double questioned do you need to do surgery or cut where entrance of driveline?????? They advised "NO." 

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Willie A.

My husband developed a blood clot in his pump. A clot buster med. by the name of tPA "Tissue  Plasminogen Activator" was used. By  the grace of GOD and  the Medical Staff at Advocate Christ Medical Center in Chicago, he is clot free. This happened Nov. of 2018.   Has someone else experience  a clot in the pump?

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In reply to by Willie A.

Patricia S.

What was his INR when he developed the clot? What is the target INR range for your husband? My husband's range is between 2.0 and 2.5. If it goes below, he could have a stroke or TIA, or a clot could form in the pump. If it goes over and he gets a cut or something internal bursts, he can have uncontrollable bleeding. All these things - except a clot in the LVAD pump - have happened to him many times. I now test my husband's INR at home once a week and make adjustments to his Coumadin dosage because he kept going in the hospital due to low out-of-range INR. We lobbied his heart failure team for me to do this more than a year ago and they reluctantly agreed. I keep a daily record of Coumadin dose and a weekly record of INR results. This has kept my husband out of the hospital for out-of-range types of events. I'm so glad to hear that there is a clot-busting drug they can try if the pump gets clogged. That must have been the ultimate in scary. We were told that they would have to replace the pump if that happened, if he survived the event long enough for the surgery. Then he'd have to survive the surgery, too. You two were so fortunate!

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In reply to by Patricia S.

Willie A.

Willie"s INR was in range. I have a INR  home monitor kit, I test at home once a week or when needed. His LVAD team give directions after each test. I keep daily records of vitals,  weight, Acc. check and reading on his LVAD controller along with the INR.  I look at the readings on his controller quite often, always have. April of 2017 implanted.  On this day I noticed his Watts have started to elevate and  his urine was darker. I called the LVAD team to let them know what was going on and we were on our way to the hospital. I have read about and was told what to look out for as for a possible clot.  My reaction was what made all  the difference. I did not wait around to see if things would get better. We were at the hospital within the hour or 2 and was diagnosed and treated for this clot in a timely manner, that is the key. This treatment will work at early stage.  He had an extended hospital stay almost 2 months. He needed to be monitored  closely.  His range was between 2.5-3.0. Clots just happen sometime. 

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In reply to by Patricia S.

Willie A.

Willie"s INR was in range. I have a INR  home monitor kit, I test at home once a week or when needed. His LVAD team give directions after each test. I keep daily records of vitals,  weight, Acc. check and reading on his LVAD controller along with the INR.  I look at the readings on his controller quite often, always have. April of 2017 implanted.  On this day I noticed his Watts have started to elevate and  his urine was darker. I called the LVAD team to let them know what was going on and we were on our way to the hospital. I have read about and was told what to look out for as for a possible clot.  My reaction was what made all  the difference. I did not wait around to see if things would get better. We were at the hospital within the hour or 2 and was diagnosed and treated for this clot in a timely manner, that is the key. This treatment will work at early stage.  He had an extended hospital stay almost 2 months. He needed to be monitored  closely.  His range was between 2.5-3.0. Clots just happen sometime. 

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In reply to by Patricia S.

Willie A.

Willie"s INR was in range. I have a INR  home monitor kit, I test at home once a week or when needed. His LVAD team give directions after each test. I keep daily records of vitals,  weight, Acc. check and reading on his LVAD controller along with the INR.  I look at the readings on his controller quite often, always have. April of 2017 implanted.  On this day I noticed his Watts have started to elevate and  his urine was darker. I called the LVAD team to let them know what was going on and we were on our way to the hospital. I have read about and was told what to look out for as for a possible clot.  My reaction was what made all  the difference. I did not wait around to see if things would get better. We were at the hospital within the hour or 2 and was diagnosed and treated for this clot in a timely manner, that is the key. This treatment will work at early stage.  He had an extended hospital stay almost 2 months. He needed to be monitored  closely.  His range was between 2.5-3.0. Clots just happen sometime. 

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In reply to by Patricia S.

Willie A.

Willie"s INR was in range. I have a INR  home monitor kit, I test at home once a week or when needed. His LVAD team give directions after each test. I keep daily records of vitals,  weight, Acc. check and reading on his LVAD controller along with the INR.  I look at the readings on his controller quite often, always have. April of 2017 implanted.  On this day I noticed his Watts have started to elevate and  his urine was darker. I called the LVAD team to let them know what was going on and we were on our way to the hospital. I have read about and was told what to look out for as for a possible clot.  My reaction was what made all  the difference. I did not wait around to see if things would get better. We were at the hospital within the hour or 2 and was diagnosed and treated for this clot in a timely manner, that is the key. This treatment will work at early stage.  He had an extended hospital stay almost 2 months. He needed to be monitored  closely.  His range was between 2.5-3.0. Clots just happen sometime. 

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In reply to by Willie A.

Susan S.

My husband developed Thrombosis 6 days after his placement.  His pump was replaced and successful. He never knew it was happening, still under.  He was in the hospital for 61 days, at the St Mary’s, Mayo , Rochester, MN.  His doctor was Dr Simon Malthais.   Amazing 😇❤️

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In reply to by Susan S.

Juanita P.

I am so happy to hear they were able to change it and he is doing "WELL."  My goodness, yes your Dr. is amazing and God is good.  Thank you for sharing...

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Susan S.

  My Husband has had his LVAD   Heart Mate ll since  October 16, 2016 .   I am his caregiver and he has not had any driveline infection. We use the Centurion Driveline  management System- Protocol 2.  We order it through Alere Monitoring now a new owner Acelis Connections Health.  We change the Driveline site every other day.  If he has a scab area, which does happen, I-will cover it with either a small cut to fit over scab, piece of drain sponge or non stick pad also cut to fit.  Always clean scissors with alcohol wipes before using.  No suave or any other oilmen should be used.

Susan, hope this helps😇

 

 

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Joanne W.

Yes, The heartmate 3 seems to have a very thin first skin. We have had the tape added to my sons several times and the cord has been changed in the office. There seems to be a defect, but no one takes the blame except you . Call that saving your ass. .  The facebook LVAD group has several members all with the same problems. They reassure it was our fault but, nothing more than tape has been added.  I don't think they know how it will be cured. .  

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In reply to by Joanne W.

Juanita P.

I think your absolutely right....My hospital advised that I would have to stay over night in ICU and they would change it, without surgery and all went well, be out the next day....I use flex tape...that is what they use.  I purchase on Amazon... 

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In reply to by Joanne W.

Juanita P.

I have the heartmate II for the last 2 1/2 years and I tape it, as they do with flex tape in the office...I purchased mine online through Amazon.  The driveline is a weak part of the LVAD, have advised them of that, they concurred and also I'm very active.  No blame was placed, but advised they need to get it right.  

 

Juanita P

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In reply to by Joanne W.

Juanita P.

I have the heartmate II for the last 2 1/2 years and I tape it, as they do with flex tape in the office...I purchased mine online through Amazon.  The driveline is a weak part of the LVAD, have advised them of that, they concurred and also I'm very active.  No blame was placed, but advised they need to get it right.  

 

Juanita P

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Connie W.

I also never had an infection w my vad. For showering, I have the shower bag then I put cling wrap over my bandages. That's what I was told to do... my problem is the tape I use for my dressing. I get rashed from it. 

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Willie A.

Scabs are not uncommon. The key is not to force them off. They will fall off when ready. Clean as usually but be gentle with them and when they detach there will be a clean break from the skin.  Willie has not had a scab in over a year and his site looks great.  This method worked for us. His LVAD nurse  advised us. He had maybe 3 over the first year, non since. 2 years with the LVAD  by the grace of GOD and we pray for many more.