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  • Struggles w/ Healing From IV Pump

    Posted by Elena on June 13, 2024 at 9:14 am

    Last October (2023) I had switched from having a sub-q on my body to an IV port. The change was enormous, but the best part was the pain was all gone. Sub-q, while I could tolerate it, was not helping me enjoy my life in the long term, so I switched. I thought all would be easy going, until November. My site was not healing. The skin looked like it was making these skin bubbles and I was still oozing this white/yellow liquid. The surgeon, nurses and my doctor all said let it air out. So I took the sticker off and put on only the gauze pads they supplied me.

    It is now June 2024 and the issue has not gone away. The skin bubbling is getting more irritated and the oozing has not stopped. I’m at my wits end and I’m starting to get scared I might end up with sepsis if I’m not careful when I clean my site (which I do almost every night now).

    My doctor has suggested I look for forums for anyone who might know anything about this or has possibly gone through this, but I’m not hopeful. No one, from the reading and research I’ve done, even remotely mentions having this issue. I’m scared I might be the only one with this problem which means I’m all on my own.

    My doctor also promised she will look up other doctors and ask for their advice in the meantime.

    My PH is as it has always been. No infections (internal or external) have been found, which is good! This whole issue has all of my doctor stumped and I myself have not a single clue how to get this healed other than having to remove my port which I am 100% against. I suspect it’s a skin issue, possibly even an allergic reaction to the tubing or maybe the way it was placed in my skin?

    Does ANYONE know ANYTHING about this?

    Please help.

    – E

    jen-cueva replied 2 weeks, 3 days ago 10 Members · 21 Replies
  • 21 Replies
  • ky

    Member
    June 13, 2024 at 2:33 pm

    @Elena I am so sorry to hear about this! So scary, I am sorry I have no experience with this as my husbands IV site is itchy and irritated but we have never seen what your talking about.

    My daughter reacted to different alcohol wipes and adhesives so I wonder if it is something like that. She was on sub que but we really had to search for ways to combat her allergies and it was a battle. Is there any other options for bandage? Have you tried the BD Chloraprep clear pens? you snap the sides and rub the around the site we have found these to be less irritating than the little clora prep pads. Perhaps taking benadryl in the evenings for a while might help let it heal but talk to your dr before trying any kind of antihistamine!

    Is there anyway you can go back on the sub q? My husbands body absolutely rejected the sub que and medication was just pooling in his body and not absorbing so I understand the fear of something not working, its terrifying and frustrating. Do you qualify for lung transplant?

    • Elena

      Member
      June 13, 2024 at 2:39 pm

      Hi @ky
      Right now I’m just using gauze with paper tape. That’s the only thing, at the moment, that won’t irritate the skin around the site. The plastic sticker they originally gave me was fine, but because the oozing would seep through the tape started to peel off on its own and it irritated my skin badly. I’m stuck with the gauze.

      Sub-q is a no-go for me. I really don’t want to deal with that pain anymore. Lung transplant is not an option.

  • ky

    Member
    June 13, 2024 at 2:36 pm

    I wonder if you can try putting the bandage on another area over night to see if you get a reaction and then try the chloro prep somewhere else and the rubbing alcohol on another area to see if you can pin exactly what might be causing the reaction? Just a last minute thought. Sending lots of love and prayers!

  • jen-cueva

    Member
    June 13, 2024 at 2:48 pm

    Hi @Elena, I’m so sorry you are having such a horrible reaction from the IV site. Unfortunately, I am on all oral medications and can’t offer much help.

    But I read the incredible experiences and suggestions @ky shared. I would love to hear if you try the bandage on another area and the prep, see what happens, and if it is a possible reaction to one of those cleaning/prepping agents or bandages. What an incredible tip.

    Until then, if this doesn’t resolve, is there a reason you transitioned besides fitting your lifestyle? I also wonder if the type of port or how they placed it is the issue. Thankfully, you don’t have any infection, but that would be my fear, too.

    Hugs and gentle prayers that this will be resolved simply within the upcoming days. It’s already been too long, my PHriend. My heart aches with you.

    • Elena

      Member
      June 14, 2024 at 8:18 am

      Hi @jen-cueva ,

      I’ve actually tried various forms. I’ve tried using the biopatch with just the gauze and the paper tape, I’ve used different types of gauze, I tried only using the cleaning/prepping agents in various ways or using one and not the other (per my nurses instructions)…
      Some methods seemed to have worked while other exacerbated the problem. When I change things up I take about a week to see if it’ll actually work so it takes some time to really see what works, which is why this is all been taking so long. I suspect it’s a skin issue more than an internal issue though.

      The main reason I changed to IV was because I was in too much pain from the sub-q, and, also, my doctor and I suspected that the medicine was not seeping through the skin like it should. She said that the medicine may not be fully effective that way. I’m noticing a big difference with the IV and it’s much better.
      It’s just this small oozing issue that’s got us all stumped.

      I wonder if it’s a simple fix and we just haven’t thought about it yet…

  • Meghan Nevada

    Member
    June 13, 2024 at 3:03 pm

    Hi Elena – I also got my IV put in October of 2023. I would say my site took about 6 weeks or so to heal. I only do my dressing changes once a week, I was told doing it more often could lead to exposure/infection/issues healing. I only change my dressing outside of my weekly routine if there is a breach in the shower or I’ve gotten sweaty from being outside. I use the Cloro-prep sticks – they remind me of a glow stick when you crack them – for my dressing changes. Occasionally I will use the alcohol swab that is included first, just to remove any crusties (I know, gross) before I clean with the cloro. But with the alcohol you can’t go over the same spot, it’s one and done and you can’t go back to that area because at that point it’s not sanitary, but I’m sure you know all this already. I am also using a bio patch right around the catheter exit site. Are you using one of these?

    My site does hurt sometimes and it will push some stuff out that turns into crusty-ness that I just clean away. When my site hurts I take Tylenol and sometimes use a warm compress. The stitches at my exit site did fall out about 4 months after. Has this happened to you? I wonder if that is what is happening.

    Also, I’m not sure who you get your supplies from, but when the Acredo nurse first was training me on how to take care of my site she told me if my skin reacts to any of these materials (the bio patch, dressing patch, etc) then to let them know because there are other products you can try.

    I’m not sure if any of that was helpful, but I hope you get relief soon.

    • Elena

      Member
      June 14, 2024 at 8:02 am

      Thanks @Meghan Nevada !
      I was given the same information as well. I used to use the bio-patch and pretty much everything you use. I had those “crusties” as you mentioned in the beginning as well, but it just kept leaking. After about two weeks (maybe less?) they took out my stiches. I wonder if they didn’t take everything out and that’s why I’m having issues…

      My site sometimes hurts, but it’s just a small pain that goes away on its own. It may be because I might be tugging on the tubing by accident. Not sure, but I know what you mean.

      I use Accredo as well and I’m in contact with the nurses that were assigned to me. I believe they are also looking into why this is still happening to me.
      I appreciate the insight.

  • Hilda

    Member
    June 13, 2024 at 5:50 pm

    Hi, I had the same issue. My pah doctor had a different approach, labeled me mentally unstable. My doctor got irritated put me on tyvaso. Time later, fast forward I was diagnosed with lupus and vascular inflammation that probably caused or prevented the proper healing of skin. Now I am going through non healing ulcers and newly diagnosed with angio inflammatory disease which has cause me inhumane pain. Please discussed with your doctor to be very careful about because the catheter caused in my situation the development of superior vena cava syndrome. Now if at the time I would had a cardio thoracic consultation they could’ve repaired but an invasive radiologist put a stent now I have a lot more difficult management issues to deal with that are a limiting factor in quality of life. Please let me be clear I am not saying this is also will happen to you. This was my experience with my medical history which has more complex components associated with medical history. There is always a reason for everything, stay positive, practice gratitude, smile and keep the greatest memories alive ❤️❤️❤️

  • jen-cueva

    Member
    June 14, 2024 at 3:28 pm

    Hi all, this is from @Randolph Reynolds; he had trouble posting and would like me to share.
    Randy says, “ Reading the posts from Elena, Bliss, and Tracy, it made me think that the medical profession has a long way to go for all the permutations of diseases that can be complicated by PAH. Bless you all.

    My most recent meeting with my PAH specialist, two weeks ago, was rather a waste of time as his office is in a move to a new location. He did tell me that it was time for another heart catherization and we talked about the new medication , Winevar. Thanks to this web site I learned enough about that new med to decide against using it. If I were ten or even five years younger I might consider it.


    My infusion site began spiking, jump in pain, and decided to change it after only ten days. Never had to do that before. It was puzzling. I assume because the previous site had not sufficient time to heal the level of pain shot up. Hopefully this one will be normal.


    I mentioned before that I now live in a retirement hotel. Every where I go i need to pull my O2 tank. This causes considerable management. However, my wife and I are more active that most in the place.

    Randy”


    Thanks, Randy. As I replied to you in your message, I am so sorry about the frustration of this not posting. Please do let us know when your RHC is scheduled. Also, I’m worried that your previous site, causing pain, may still be a sign of the beginning of an infection. Has this site been used and gone OK previously? Prayers that that pain resolves for you soon and that there is nothing to worry about.

    Oh yeah, lugging those tanks around takes energy and muscles. Can they give you a portable or smaller tank to use in a backpack with a conserving device? Maybe ask your DME (O2 company).

    • Colleen Steele

      Member
      June 14, 2024 at 7:16 pm

      @Randolph Reynolds it’s good to hear that information found on the forums helped you make an informed decision about your own health and treatment. So sorry to hear about the site pain though. Is it feeling better since you changed it?

  • Carol Volckmann

    Member
    June 16, 2024 at 8:09 pm

    Hi Elena, so sorry you are having so much trouble with your IV site. I also switched from subQ to the IV site because I could no longer handle the pain.

    My skin is also very sensitive to adhesives and tapes. My husband found on line a skin barrier wound dressing completely water proof. It is called AquaCell Foam and you can get it through Accredo. It is very soft interior and the adhesive part does not irritate my skin. When I change the AquaCell I use the ClorPrep to clean around and underneath the site, I do this once a week or sooner if the wound dressing gets wet.

    What I find remarkable is that your doctors, nurses etc are not trying to figure this out 🤔 and leaving you to find a solution on your own. I think the several folks on the forum have come up with some great ideas. Trying dressing tape and cleaning products on different spots on your body is a great idea, you don’t want to irritate your site any more than it already is.

    I am sending you positive ✨️ vibes and hoping you will find what work for you very very soon!!

  • Alicia K

    Member
    June 17, 2024 at 9:45 am

    Hello Elena,

    I am very sorry to hear about your challenges with the IV. Your story really resonates with me because I went through a similar experience. You are definitely not the only one! I can’t tell you what to do or recommend anything because everyone’s different and you’ll need to follow up with your medical team but I’ll share my story in case it helps. I was on IV Remodulin for almost 2 years and during that time, my site never healed. Constantly oozing, despite trying every type of dressing including plain gauze. I did allergy testing with a dermatologist and discovered that I am allergic to a number of substances but I couldn’t connect them to the dressings I was using or my central line because the manufacturers didn’t disclose all the ingredients in their products (on their materials & safety data sheets). The dermatologist told me that there’s a difference between an allergen and an irritant. Things like chloraprep are more likely to be an irritant than an allergen. The challenge is that you can be exposed once to an allergen and it takes a while for the allergic reaction to heal. I got stuck in this awful cycle because after the initial allergic reaction to the tegarderm they gave me, I kept irritating the site when I cleaned it (which I had to do to avoid infection). I knew I was allergic to tegaderm dressings because they left a perfect red square on my skin, so I avoid those like the plague (I take my own IV3000 dressings with me when I go to the hospital for heart caths, etc). I liked to try different dressings first by putting them on different parts of my body for a few days before putting them on my delicate site. Ultimately, I continued oozing even when I was just using gauze. Eventually, I got an infection in my chest so they pulled out my central line and gave me a picc line on my arm. It was a lot better, but still oozed and never healed. So, after a few months, they pulled that one out and put me on oral meds (uptravi). My pressures aren’t as good as they were on the pump but the skin issues and infections I had on the pump make the orals worth it. If I had to go back on the pump, I would try a different line (I had the purple Bard line so I would ask for the Hickman) in case it made a difference. And if that doesn’t work, I’ll have to try the subq. Good luck!!

    • jen-cueva

      Member
      June 20, 2024 at 3:26 pm

      Wow, @Elena and @Alicia K, you both have had a mess along with our PHriend, @Carol Volckmann !

      It’s interesting how everyone’s skin is so unique, as you mentioned. By sharing your experiences, you might discover tips that could be helpful for you or someone else. When looking for assistance, it’s always beneficial to read about others’ experiences and the types of dressings and remedies that work for them.

      Thank you all for sharing!

  • Karen Endelman

    Member
    June 18, 2024 at 2:12 pm

    I am about to start a subq treatment using winrevair. I am new to doing this since all of my meds have been oral. I didn’t realize that there could be issues where the body didn’t absorb the meds and “pooled”. I also didn’t think there would be that much pain involved. My treatments will be every 3 weeks. Does anyone have any advise on starting subq?

  • Karen Endelman

    Member
    June 21, 2024 at 9:42 am

    Thanks, Jenn.

    • jen-cueva

      Member
      June 26, 2024 at 9:35 pm

      Of course, @Karen Endelman, it’s my pleasure. That’s why we are here to help support and offer our experiences and knowledge to others. Do you have a date when the nurse will come out to get you started on Winrevair?

  • Rosa

    Member
    June 26, 2024 at 7:52 pm

    I had the same problem with rash and oozing due to alcohol wipes and adhesives. I ended up using only saline syringes to clean the site and cover with gauze and paper tape. I also used Cordran tape to minimize oozing. That worked for me for almost 5 years. I’m no longer on Remodulin and switched to oral medication.

    • jen-cueva

      Member
      June 26, 2024 at 9:41 pm

      Hi @Rosa, Thank you for sharing your experience with oozing, skin irritation, and sensitivity. I’m happy you found something that helped and worked better for you during the five years you were on Remodulin.

      Which oral medications did you transition to? How long did that process take? Please keep us updated. Thanks for sharing, as that combination may help someone else.

  • Rosa

    Member
    June 27, 2024 at 10:07 pm

    I’m now on Uptravi, but having to deal with side effects such as headache and pressure on my upper body several hours after the medication. Reducing dosage to see if that helps.

    • jen-cueva

      Member
      June 28, 2024 at 9:12 pm

      Hi @Rosa, I’m sorry you have those nagging side effects with Uptravi. I’ve been on it for years, just after it was approved. The titration process can be complicated and painful. What dosage are you on now?

      When I titrated and started it, it was the same for me. I took a few extra weeks to increase to allow my body time to adjust. Some never get to the high dosage, and that’s OK. You are doing it best by letting your PH team know. Also, eating when taking them throughout the day helps.

      I’ll tag you in some info where others share their experiences with Uptravi. Decreasing it back will hopefully help relieve some of those pesky side effects. Please keep us posted.

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