This topic contains 4 replies, has 3 voices, and was last updated by  Brittany Foster 1 month, 1 week ago.

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  • #20845
     Brittany Foster 
    Keymaster

    I know that many with PH may receive treatments or therapies through a lot of different ways. Some have a pump, others use oxygen, oral meds, IV therapy etc. Lately with my infections I haven’t been able to hold down the medication and my j tube site is too painful to put any medication through it. To help clear up the drainage around my tube and current Staph infection, my doctors are thinking about putting a PICC line in which lasts for a few weeks so I can have a nurse administer IV antibiotics or I can do them myself once I learn.

    Have you ever had a PICC line? What was it for? What is your experience like with one? Do you have any tips to share with me?

  • #20850
     Colleen Steele 
    Keymaster

    Brittany,
    My son had a picc line for Milrinone when he was in heart failure then again for treatments post transplant. Will you have a home nurse visiting to help with it’s care or will you be flushing it yourself? Stock up on coban. It’s the most comfortable way to secure it so that you aren’t snagging it on anything. Learning to care for it isn’t too difficult. I would say after a few times you will have it down. When you have something big going on a picc line is great to illuminate the constantly being poked and battling to find veins. Once you get it, as things come up and you have questions or want specific suggestions just let me know. I have lot’s of experience with this.

    • #20877
       Brittany Foster 
      Keymaster

      Thank you so much Colleen,
      I know you and your son would be a great source of information and personal experience for this. Is coban a type of padding that you put over it? How would you suggest protecting it to shower with it? I’m sure it will be another thing to get used to but even my cardiologist was in support of me getting one especially because they always have such a hard time finding veins and getting IV access for me and with frequent infection it definitely would be better to get things treated right away. I just have been taking the oral antibiotics but definitely am throwing them up. They have sulfate in them and I can taste that awful burning in the back of my throat and chest.

  • #20862
     Jen Cueva 
    Participant

    Hi Brittany,
    I think that a PICC line would benefit you foR short-term. I had one in twice for IV antibiotics and iron infusions at home. I still have the IV pole and supplies if you need to borrow, lol – some days I use it for exercise, hehe

    When I had mine and complained , I thought of all of the PH patients who deal with lines continuously. Like Colleen said, securing it is important and something that doesn’t rip off your skin. I think I used the aquaguard and another kind.

    My home health nurse came out twice a week, so my hubby and daughter were educated on flushing etc since I had meds twice per day. I wanted then to put it where I could do it and they wouldn’t.

    Please keep us posted, I’ll try to help in any way I can. If you do borrow my pole, I’ll need it back. Hehe

    • #20876
       Brittany Foster 
      Keymaster

      Thank you so much, Jen.
      I actually have an IV pole for my tube feeds so I am all set with getting one! Thank you for the offer though, I really appreciate it. I should be getting mine placed the beginning of this week for medications and for fluid as needed because my blood pressure was 90/50 at my last visit and I have been getting pretty dizzy with standing and just feel more worn out than usual. I know that IV meds could help with that and increase some of my blood volume so I can feel better. I will have to ask about the different pads to protect it, especially the ones for sensitive skin. I have been using tape for my tube and the tape just completely rips off my skin and leaves it so irritated to the point where it burns in the shower because it just takes the skin right off. Painful!

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