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Lee S. Recipient

Driveline Port area rash

Been dealing with a rash around the port area. Port is not infected. My skin can't take anymore adhesive. Wondering if anyone has experienced this situation. Any help or suggestion would help!!!

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Stan C.

Of course please check with your LVAD team but is the rash "under" the actual bandage or just "inside" the bandage area?  For me, I use Triamcinolone 0.1% which I also use for my eczema.  I apply a small amount around the outside edge of the bandage and it will soak through the skin to help.  My LVAD team also suggested for me to use iodine for sterilizing the area instead of the 2 "lollypop" cleaners that come in the kit.  Verdict still out on the iodine as we just started it last Friday but so far I haven't had any itching.

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In reply to by Stan C.

Lee S.

I used the same cream and method, It does help. The rash is under the actual bandage/adhesive. My Dr just told me about Cavilon. Just tried it over the weekend and what a difference it makes. I can't use the LVAD dressings with the window it is too harsh on my skin, but I might try again since I have the Cavilon. Iodine was suggusted by my LVAD team but it doesn't help nor does the lollypop cleaners from the kit. I use Medipore dressing which currently is working.

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In reply to by Stan C.

Candi G.

Hi,  I have cared for my father for 6 years this December.  Our nurse told us if you don’t allow the Barrie cream time to dry it can cause a rash.  However, you should take a picture and send to your team. 

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MATHEW M.

I was told to let the area 'air out' for 30 minutes when I got rashes.
Everyone is different.

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Ginger H.

I have been dealing with the same problem for 3 years.  The original products used in the bandage changing routine did not irritate my skin as much as the new kit.  I have isolated each product and hopefully by eliminating the Barrier Film, I will find a more comfortable bandage.

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In reply to by Ginger H.

Lee S.

I agree with you. when I was in the hosptal the kits were fine and I didn't have any problems. Now I can't use the kit it's to harsh. My Dr told me about a barrier film called Cavilon, it's worked wonders over the weekend. I've been trying all kind of things. Implanted 10/1/21.

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In reply to by Lee S.

Chuck S.

The original kits were ok the kits nowadays the  hepecleanse got to strong so we dilute it to 25% hepacleanse I don’t have that problem with it now

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Chuck S.

  • I have had my LVAD for 4-1/2 years and I have many infections including a fungal, this last year or I have had a rash around the site which is bright red and itchy. Comes and goes.
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James J.

I also use Triamcinolone occasionally. Not sure if it’s the anchor adhesive or prep. Clears up right away.

James J

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Lee S.

Still going nuts trying to figure out what to do. Saw my LVAD team not much help. My personal Dr recommended Silverlon dressing which is a 1.5 x 1.5 piece  that covers your port area with a piece of 2 x2 gauze on top of it. Then a put a piece of tegaderm to cover all of it. Nothing is working!!!! It feels like sandpaper rubbing all day everyday. I don't think these Dr's are hearing me!!! Its not the port area!!! Its the surrounding area. I do use the Triamcinolone cream with every change. The port was fine until they wanted me to start using the Silverlon dressing now the skin is purple colored surrounding the hole. I'm at a loss right now....I geuss I'll just suffer through it day after day.

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In reply to by Mary P.

Lee S.

Thanks for the tip Mary.....and don't you know that I have cleaned the area w/ sterile water the last 2 changes and it has helped tremendously. It finally feels so good!!!!!!!!!!!! There' is some irritation but nothing like it was. I can only thank everyone for putting their "2 cents" in to help me. I do have an appt with my primary dr tomorrow and I am going to request a referral for a dermatologist, what do I have to lose.

Thanks again Gang!!!

 

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Stan C.

Lee, can I get a little clarification to make sure we are understanding exactly where this rash is?  I have had multiple problems myself but when I reread this message string I am imagining several different locations.

1. Around the driveline at the entrance into the body.

2. Outside the driveline area but still under the bandage (not bandage adhesive area).

3. Under the actual bandage adhesive area.

4. Outside the bandage adhesive area.

Maybe with this clarification we can better help you.

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Lee S.

Hey Stan, 

The rash is around the underside of the tegaderm and the adhesive. I didn't have any rash at the actual entrance site but now I do due to the Silverlon dressing they wanted me to use. (3 changes with the silverlon) Whatever adhesive I use I break out. Its very uncomfortable and I hate to even move.....like I said, it's feels like someone is sanding my body with sandpaper. I am planning on making a call tomorrow to my LVAD team to follow-up with them and honestly I'm not expecting any results, they are baffled by it.

Thanks Stan for your concern and help!!!!

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Stan C.

Lee,

Sounds like you are allergic to both the Silverlon dressing and the sterile cleanser in your LVAD dressing kit.  I am also allergic to the sterile dressing in my LVAD dressing kit so I use iodine swabs to clean and then a saline solution to rinse off most of the iodine stain.  The iodine swabs are available from the same place I get my LVAD kits from.  Let us know what your LVAD team says.

BTW, I have also had to get ugly and loud (but never abusive or foul language) with my LVAD team when I feel like they are not listening to me and treat me like a number.  Fact is, we may have another such meeting this month if we don't get something done about a keratin growth I have under the sterile dressing.

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Lee S.

Called the LVAD team this morning and as I said, really no help. Explained the situation with the rash since you guys instructed me to use the Silverlon dressing. They are baffled...he said the same thing he has in the last 3 visits. He'll check w/ the team!!! It's getting old. Told him my entrance site was perfect until I started using the silverlon, now it's purple.He wants me to take a picture and send it when i change the dressing. I'll just continue to be uncomfortable!!!

What else can I do?

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In reply to by Lee S.

MATHEW M.

I was told to let it air out for 30 minutes before placing new dressing.

Everyone is different.

@LVADMat

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In reply to by Lee S.

Stan C.

I understand how frustrating it is when they do not listen to you.  As I mentioned, this is when I get real cranky with them and am not afraid to ask for a higher level person.

I am again sending photos of a problem I have and am finally seeing a surgeon about it in a couple of weeks.  Just waiting to see what he says before I start up the ladder again.

Wish I had more advice to offer but do wish you all the luck in the world that you get it worked out.  BTW, if you haven't heard from them in a few days be sure to call and check on the progress.

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Jillian F.

Afternoon, 

Some of our patient suffer from the same problem. When you use band-aids does that adhesive cause irritation as well? If not you should try band-aids around the areas where the tape sits so the tegaderm isn't sitting directly on your skin. You can also ask your team to give you mepilex to try if the band-aids don't work. We had a patient who had to use the mepilex under the borders of the dressing because it irritated her skin so badly. It did eventually heal. Whatever you use just make sure you are still applying them sterilely. Hope this helps.  :)  

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In reply to by Jillian F.

Lee S.

Hi Jillian,

Never tried band-aids yet but that's a good idea. My LVAD team just sent me 6x6 Centurion Driveline Dressing yesterday. I'm going to try it today. The Centurion driveline dressing is what I get and I'm allergic to them so I don't know why they would send ones a little bigger. I do have a roll of mediplex and it doesn't help. I'm afraid of an infection cause of all this changing and screwing around trying to solve this problem. It feels like someone taped a piece of 80 grit sandpaper to my stomach. If the 6 x 6 dressing doesn't work i'll go get some band-aids and try that. I'm thinking they gave me the 6 x 6 dressing to try to heal the area under it. I'm just so uncomfortable!!!!! 

Thanks Jullian for your support

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Mitchell W.

Kind of late to the party, but saw the rash post and I have some insight. I had my LVAD for almost 7 years, did have 1 drive-line infection after switching to Band-Aids due to my rash issues. (I DO NOT RECOMMEND THE BAND-AID ROUTE!!!  That's how I ended up with my infection). It turns out I developed and allergy to the Chloraprep in the wands applicators. After working with my lead LVAD Nurse, she was able to work with the infection department and the wound care team and came up with a product called ExSept Plus. It's made by a company called Angelint. This product changed my life. Once I started using the ExSept instead of the Chloraprep wands, the rashes went away and stayed away. From that point on it was the ExSept to clean, and a Tegaderm to cover. Never had issues after that.

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In reply to by Mitchell W.

Jillian F.

I wouldn't recommend band-aids to cover the actual exit site but using on the periphery where the tegaderm sits to create a barrier in between the skin and the adhesive of the tegaderm. We also had a patient switch to alcohol to clean the site because the chloraprep was causing an issue as well. But in speaking with other coordinators you can ask about using Phase One wound cleaner or Vashe wound cleaner to see if that is ok with them if you are finding it's truly the chloraprep. 

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In reply to by Jillian F.

Mitchell W.

I was transplanted 2 years ago. Just passing along life experiences I learned over the years with my LVAD. I had mild issues with the adhesives on the Tegaderms, but ultimately the Chloraprep was the culprit. Even the barrier films would cause issues for me. It was trial and error figuring out what was going on. That's when I switched to the Band-Aids, and in the end I paid the price. That's when everyone finally got serious about finding me a solution. I have been away from the site for a while and saw this thread, figured I would drop in and pass along my experiences.

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In reply to by Mitchell W.

Lee S.

Hey Mitchell,

My rash is caused by the adhesive not the Chloraprep in the dressing kit. Any adhesive right now is so irritating to me. Don't know if the ExSept would work or not. But I would be willing to try.

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Diane B.

Hi Lee           My husband has super sensitive skin and we have had to make a lot of adjustments to his dressing procedure. One thing we discovered was that the chlorihexadine used to clean the exit site was way too strong. We use about a 1/3 of the initial dose and that has helped sensitivity. It is primarily the dressing itself (Centurion) that he is allergic to. With trial and error we have discovered the Smith and Nephew IV3000 dressing (available from Amazon) which does not cause his skin to react. Because this dressing is only 4X3 we have adjusted to IV split dressing 2X2. The biggest problem with this dressing is the anchoring of the line as it leaves dressing. I have yet to find a perfect solution for that yet so we continue to use the centurion butterfly piece shortened by half and making sure we use "Sure Prep" or Cavillon underneath to lessen reaction. He was also allergic to anchor so now we use the Centurion Foley anchor FCS300XT which is foam based and does not cause rash. Knock on wood - we seem to be able to minimize dressing rash. The other thing that our dermatologist suggested was to take a long acting , non-drowsy anti-histamine which seems to help with any itching, as well as prescription cortisone gel around edges of dressing. Hope some of these ideas help !  Diane

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In reply to by Diane B.

Lee S.

Another day to fight the rash. Well my LVAD team sent me the 6 x 6 driveline dressings. Here's the thing....I told them I get a rash from any adhesive I use, so what do they do....send a 6 x6 driveline dressing that is ALL ADHESIVE ON ONE SIDE!!!!!!! I'm about ready to call them and blast them. I don't know why no one is hearing me!!! It's NOT the chloraprep...I DO NOT USE IT!!!  I'm really tired of feeling this way. And I don't wanna offend anyone here. I feel like I could just rip the whole deal out. It's hard moving around bending over....driving...any bump in the road hurts....and lord knows that the roads in PA are horrible.  There's been suggestions by many here and I appreciate the help, it sounds like i'm on my own here. It's just deciding which route to take first, because the LVAD team and my regular DR at at a loss!!

Thanks Diane for your response, it looks like your suggestion is up first!!

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In reply to by Lee S.

Sonya O.

It really is a game of trial and error... here are some suggestions....  1) if you are confident the adhesive is the issue , try a different brand of adhesive.... Tegaderm, IV 3000, Mepilex Border are options . They are all slightly different. The Mepilex Border seems to be the skin friendliest in my opinion but not so sticky so not a good option if you leave the dressing on for greater than 3 days.  2) Using Barrier Sprays not creams.  These are applied after the  cleaning, before you apply the gauze.  Just be sure that the spray is completely dry before you apply the dressing. Again, there are different brands of barrier sprays you can trial. They toughen up the skin.  3)  Making the dressing smaller then bigger then smaller again....alternating the size means the adhesive is not on the same skin surface each dressing change. 4) the use of Pulmicort puffer .  This needs a perscription....so you will need to connect with your health care team for this one.  This is a puffer used for asthma but we use it on the skin,,, like literally squirt the light mist on the skin.  The steroid in the puffer helps reduce the itchy scratchy inflamed skin... the catch with this one is that it can't be used all the time or it will cause thinning of the outer layer of skin so only use when it's real bad.  Again use after the cleaning and make sure it is completely dry before putting the dressing back on.   I hope something in these suggestions are helpful.  Best of luck.

 

 

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In reply to by Diane B.

Deannie S.

Hi Diane

I was interested in the Smith and Nephew IV 3000 dressing you mentioned. I have looked on Amazon and don't find any that are 4x3 in size. I found the 4 x 4 & 3/4 size and also see they have a 2 & 3/8 x 2 & 3/4 inch size, but just wanted to double check which one you use when you have a chance. Thanks in advance.

 

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In reply to by Deannie S.

Diane B.

Hi Deannie   You are correct it is the 4 X 4 3/4 ". Once we switched to this we reduced size of sterile split IV dressing to the 2 X 2". If you are using silverlon this fits nicely underneath. I also use a regular 2X2 folded in half  and then a 2 X 3" non stick sterile dressing over all before the IV 3000 is applied. You may have to practice a couple of times away from the exit site to get the hang of it.  I also just found another S & N product for IV sites made of the same material that I use to hold the driveline where it comes out from under dressing. It is a C shape (not available from Amazon but found it at Walmart)and with some careful manipulation it works well. No skin irritation under it but just in case I apply skin protector under site as well as under anchor for driveline. We use Centurian FCS300XTS catheter anchor which is a lot less irritating. It is foam rather than latex base.  Hope this helps!  Diane

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In reply to by Diane B.

Deannie S.

Diane, thanks for the info. My rash problems are very minor compared to some issues on here but I certainly appreciate you sharing. It sounds like you can't see the driveline exit area after you complete the dressing. My team seemed to think we need to see the actual exit after the dressing is applied. But it sounds like what you are doing works well and I hope to try it soon. Thanks again, Deannie

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In reply to by Deannie S.

Diane B.

Hi Deannie  You are correct the exit site is not visible after dressing complete. On initial discharge we were doing changes everyday so not an issue. Now, unless we have a problem it is about every 3rd day. I think that also helps to decrease the skin sensitivity because less damage to surrounding area from removal. How often does your team tell you to change the dressings? Stay safe & well.  Diane

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Joanne L.

  Hi Lee,

I have been dealing with the same thing for awhile now. My husband does my dressing changes. We both have been observing very closely what is going on. We both noticed that I have no rash around the centurion foley area. I have been using this product for 8 months with no problem. It is a silicone based adhesive. It definitely appears to be only the area where the adhesive sticks around my dressing  which is causing the problems. We have tried changing the tape to different areas but sure enough no matter where the tape is applied -another rash breaks out. I am now using the Triamcinolone cream for the rash which is slowly starting to work. The problem is that I can stop the rash temporarily with this cream but the rash will always reappear where the adhesive is. We have done some research on the silicone based tapes and it is encouraging. My Doctors gave me very specific instructions on how to use this. We are going to use the safe and simple tape from Wound Care Resources. We will use the steroid cream to get rid of the rash first. After that -We are going to switch to the silicone tape just to tape down  the perimeter. Then tape over the whole area with the medipore tape. This should stop the adhesive rash. Using Cavilon is our back up plan. I am feeling very hopeful that this is the solution. I don’t think that people understand how uncomfortable this can be. Losing sleep from itching sensation at night is horrible. I refuse to itch it because that can cause an infection. So far my driveline has been fine.My heart goes out to you. I hope all this gets cleared up soon!
Be well- Joanne L.

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In reply to by Joanne L.

Lee S.

Thanks Joanne for the insight and support. As you can see from previous posts I've been fighting it too!! It's so uncomfortable, feels like sandpaper on my stomach. If you move...it hurts. ya know I've have adjusted to the LVAD.....battery weight....no comfortable clothing to wear...etc...etc...but this rash is almost unbearable. Laying in bed is the best...your flat on your back and not moving. I really haven't lost any sleep due to it. I ordered Exsept Plus and Smith & Nephew IV 3000 dressing and should be here tomorrow. I'll let you know how those products work'. You mentioned wound care resources and I'll check it out too. I use the same cream and it does help. Gone thru several tubes already. I'm ready to ask my LVAD team for a referral for a dermatologist and a wound care specialist. Maybe they will catch on if you know what I mean!!

Thanks again Joanne, i'll be in touch

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Chuck S.

Good afternoon 

I have been a rash as well off & on lasts a week or so hasn’t effected my driveline at all just about the size of a half dollar doesn’t bother me enough to worry about 

thank you

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Lee S.

Well like  said the fight continues. after receiving the 2 products i used both of them and things have only gotten progressively worse. The Exsept has created a much worse condition then i had. The new dressing isn't working either. I'm about done with it all. I went back today and removed the dressing and went with a 4 x 4 gauze to "air out" the area under it. Maybe I can get a few hours of relief. I think its time to  call the LVAD team and call them OUT!!! Get a referral for a dermatolgist and a wound care specialist.

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In reply to by Lee S.

Joanne L.

Hi Lee,

My husband and I have been using the 4 by 4 gauze over the 2 by 2 split gauze. We started doing this to try and give the rash affected skin a chance to heal. It does work -but  I always develop another adhesive rash wherever the tape goes. It is kind of like an advanced game of whack a mole. However, the steroid cream does help. It also keeps the rash further away from the driveline area which is important to prevent infection. I have been very fortunate that my LVAD team is very responsive to all of this. They don’t just leave me without help. They always try to keep working on it. I am sorry to hear that your team doesn’t always respond. I have always known that the management of this device is as important as the surgery. Before my surgery - we got all the statistics on my hospital and LVAD team and they probably have one of the best track records in the country. I would definitely speak up and ask for action!
My rash is almost gone now from the steroid cream. So in the next day or so We are going to try the silicone tape- will let you know how it goes. Hope you feel better soon!! Joanne L.

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In reply to by Joanne L.

Lee S.

Joanne,

Sounds exactly like mine. I have a 4 x 4 gauze on now to let it heal w/ the help of the T-cream. But just like yours wherever that tape lays is where it will break out. Tried all kind of different tape....currently have the gauze down with Mefix tape

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Harriett D.

My husband had a round of severe rash beginning about a month after his surgery.  We do not use the kit at all.  
when the doctor saw it he had us use iodine.  We now use the email 1.5 “ square silverlon disc with a 2” split drainage gauze.  
I also use a 4” split gauze folded into a roll under the driveline to prevent the line from imprinting the skin.  Over that I put anther 4” split gauze folded in half.  We use Hypafix 4” tape.  Now I’m not sure you really need the additional 4” gauze but that is what out LVAD team came up with.  Within 2 days we were seeing results!  No problems since?  Hope this is helpful.  Those rashes are no fun!

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Ginger H.

I have gone back to using the original products to change my LVAD driveline dressing. First, clean with Hibiclen Solution. Then, Rinse area with Sterile water and finally cover driveline with Tegaderm HP.  The new kits are good for traveling because they are compact and fully sealed but I can not use the products for long.

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Lee S.

Hi Harriett, I ordered some of that tape today from amazon. I'm willing to try anything at this point. I also do not and will not use the Centurion LVAD kit. It's horrible. 2x2 and 4x4 gauze is the best so far. My personnel Dr emailed me today and wants to send me to a wound care specialist....I told him to line it up and I'll go.

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In reply to by Lee S.

Harriett D.

Glad you have. Doctor that can help.  We think the iodine really helped the rash.  We do not use any part of the kit.  The silverlon disc has no tape either.  It was trial & err for almost 2 months of severe discomfort  but my husband has been doing very well since with no rash & no infections.

good luck!

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In reply to by Lee S.

Mariza M.

Hi Lee and Harriet

What are you using in the place of Centurion? It works Okay for me, but is becoming too expensive  and difficult to be delivered in Brazil.

Sincerely,

Mariza Morgado 

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In reply to by Mariza M.

Lee S.

Hey Mariza,

I currently have a oversized band-aid on the site today, well at least that is what it looks like. I usually use a 2x2 or 4x4 gauze on it and tape it down with hypo-allergenic tape.The rash is a little bit better today but still raging. It's all red around the bandage.

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Lee S.

Well....i'm throwing the towel in. I've tried about everything everyone has suggested to me. To no advil nothing has helped. I'm sitting here right now with no bandage or covering. The rash is raging and it's difficult to even move and type this. I don't know where I go from here. LVAD team is no help... my personel Dr wants to see me but that's not till Feb 3rd. Its absolutley brutal to put any adhesive on me!! This has been going on for months and no one seems to care!!!

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In reply to by Lee S.

Diane B.

Hi Lee

I am so sorry you are going through this. Did you try taking an antihistamine pill? My husband is allergic to all tapes. As I mentioned before the ONLY dressing he does not react to is Smith & Nephew IV 3000 4X4.75. Switching to that will only help the underneath of dressing. If you have a reddened itchy sore circle around exit wound that is caused by something else. Is there a fluid discharge around exit? Maybe try cleaning with hydrogen peroxide and then airing for half hour in conjunction with antihistamine. 

wish we could do more to help. Are you taking pictures to show MD?

 

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Lee S.

Thanks Diane for your concern. I did get some of that dressing and used it...it's all sticky adhesive.There is a smaal discharge from the site and it's hard as a rock, Last appt w/ the LVAD they took a culture and it was negative.The irritation is everywhere the dressing would be, under the adhesive, around the site itself, It's completely exposed cause I cannot even walk with a bandage on it, It feels worst then sandpaper.I did take pics for my Dr and emailed them to him. He referred me to a wound specialist but that was a week ago and haven't head a thing. This horrible.....can't excerise, do things a round the house. I'm stuck in a chair. This has been going on for months and nobody can resolve it. I'm getting tired of living this way!!!!!!!

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In reply to by Lee S.

David M.

What VAD program are you affiliated with?