Want a port.... doc may say NO

[bloggymom]

I went to have a drug level blood test today for my MAC. They could not find a vein... anywhere. Horribly painful. They finally had to do a deep vein IV (just like getting a PICC but no long tube to my heart). Horribly stressful and now my arm hurts... and my wrist... and my hand.

I WANT A PORT. My arm veins are horrible and when I need a blood draw I become a human pin cushion because they have to dig to find something worth using. Infection disease doc's nurse thinks that a port is an excellent idea since they will need to keep taking blood levels as long as I am on all these medications. My CF nurse is not agreeing. She will influence my CF docs decision... have a horrible feeling. Infection disease doc is the one who initially suggested that I get a Port. I am not on any IV drugs at the time but we might need to use them to fight the MAC. HATE PICCS!!!

What do I do?? Do I go to my infection disease doc and see if she can press the issue and get me the port or must my CF docs agree to this little plan??

 

[Iamqueenofeverything]

I saw that you said," My CF nurse is not agreeing. She will influence my CF docs decision". I think no nurse should influence a doc like this. true the nurses have a lot of knowledge and see you often but the doc and you have the final word. If the perifial and picc lines aren't working, the port is the next step. i finally got one. my doc said that i couldnt lift more then 10 pounds though. it change my life some but it's worth not being poked to your black and blue and the nurse take 1.5 hours to find a vien. ( that's how long they took with me to do a picc). now with the port it takes about 5 minutes to access the line and i get started on meds immediately.

 

[jwags326]

That seems strange that your CF doc would be against a port. Mine is encouraging me to get one since my last Picc resulted in a blood clot. My husband and I are in the process of trying to conceive and my doc would like to have a port placed before I get pregnant. I only go on IVs once a year but she still encouraged it. I go in two weeks to get it.

Hope things work out the way you hope!!

 

[JustDucky]

It's your body and you have the right to a port if that is what you want, especially because they are having such difficulty drawing labs on you. I agree with the others, a nurse should not sway doctors, a nurse should advocate and be there for the patient. Why would she be against it? If your ID doc is on board, then that should be enough for them to send you to a surgeon to get it placed. I requested my port after 5 terrible PICC's, my doc didn't even blink and within a few days, I was the proud owner of a port. I absolutely love my port, I too am a difficult stick and it is so nice to just access my port and draw the labs, all with very little to no pain. I also love that starting IV's is no longer a hassle...I access my own port, so when the doc says it is time to start the IV's I just access and go...no more waiting for PICC lines to be placed. So convenient.
I hope it works out for you in the end...keep pushing for a port if that is what you want.

Jenn 41 wCF

 

[keefer11]

Do all of your PICC lines occur through just a normal Infusion nurse? Or do you do it through the IR department? For a long time I did it through the IR department where they have a X-ray machine and an ultrasound and they had better luck than the Infusion nurses. It still was a pain in the butt, but that's what my doctor wanted.

Your doctor sounds just like mine. My doctor's reasoning was that once you get a port and use up all of those areas where Ports are placed you are screwed. He thought I would outlive my ports. He wanted me to make sure that there were absolutely no veins left in my arm before we went to a port. He eventually budged after I had two IR department PICC line insertions and they said they both said it was difficult and had issues inserting it.

So we used up all my arm veins and they have inserted the port, but even the surgeon said I was a difficult patient(bad veins) and I think it is because of all the scarring from the piccs.

 

[lilmac1177]

i'm having a hard time wrapping my head around any nurse having a say in whether you get a port or not AND that she would discourage it even if she did. beyond that, isn't standard treatment for MAC six weeks of IV therapy (we thought a while ago that i had MAC and i was told that's what treatment would be)? regardless, you're a CF patient, IVs are going to be part of the equation at some point. it would only make sense to me!

 

[billiewoolley]

I was told I wasn't suited for a port, but my veins are so terrible! ive had 100 at least little lines, a few long lines (which was the most pain ive been through putting one of those in) and ive had a couple PICC lines. these were all done in the space of 6 months, as I don't go into hospital often; ive only been in about 5 times my whole life, im now aged 18. but i pushed because of my veins being so terrible, and they should let you. just keep pushing, and saying how painful it is every time having too have 348235 needles prodded into in a day lol.