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#1 KarenL


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Posted 07 February 2008 - 01:42 AM

Well, it seems I have severe anemia, and will be needing iron infusions and possibly even blood from time to time. The rheumatologist is also still trying for the flolan for me, and says he may ask the insurance under the PAH flag as I have a reading of 32...(whatever that means if anyone knows, tell me!) So, because I have such horrendous history with IV placement, (the last time I was hospitalized it took 12 tries and they wound up doing a central line) he says we should do a PICC line. I looked it up and it looks bad. How do you keep it clean? Does it hang out of you all the time? Help! If anyone has down this let me know. I'm not complaining, hopefully these infusions are going to make me feel a whole lot better, so I'm willing to try. Just feeling like a guinea pig---again!
Peace and namaste,

#2 LisaBulman


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Posted 07 February 2008 - 03:00 AM

Hi Karen,
When I had my second child I was really sick with a fever of 103 for 7 days. They had no idea what was wrong with me and I kept blowing through IV's every day or so. After being in the hospital for 10 days and finally having my fever go down they were ready to send me home with a picc line for heparin. They put mine in at the bend in my arm. It wasn't bad and I knew I would I would only have it in for a few days, 4 at the most. They should give you items to keep it dry and clean. I wouldn't worry too much about it. Although easy for me to say, my line didn't even last 36 hours! The vein blew while it was in so they had to take it out.

Good luck!

Lisa Bulman
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#3 Terri



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Posted 07 February 2008 - 03:25 AM

Hello Karen,

My husband recently had a picc line for some powerful heart medication that could not be given in a vein. He really had no problem with it. He had it for about 10 days. My mom had one a few years ago for about 2 months. She had a bone infection and had to have daily antibiotics. Both said it did not hurt to have it put in or taken out. They (the medical personnel) flush it to prevent infection. I believe you have to keep it dry (like showering). There is a IV attachment that you can see, it's on the top part of your arm. On my mom they kept one of those stretchy ace bandages on it when it wasn't being used. Both said it was not as bad as it sounds. Good luck


#4 janey


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Posted 07 February 2008 - 04:37 AM

I had a picc line last year when I was hospitalized. I had to have 3 ports because of the different antibiotics I was on. Getting it install was quite interesting. They use an ultrasound to find a good vein from the upper part of the arm toward the chest. They very gentle thread the line (about 12") into the vein. It didn't hurt at all. I got to watch the procedure. Taking it out was even easier. They just gentle pulled it out. Didn't feel a thing. They told me it could be left in for up to a year but had to be thoroughly cleaned once a week. At first they thought I would be going home with. They said a nurse would be sent out to clean it and to administer my medications.

Yes the port does hang off your arm, but as Terri mentioned, an ace bandage can hide it and keep it stable. I'm sure they will give you excellent instructions on how to care for it. This best part is NOT have to get stuck all the time, multiple times. So consider the trade off.

The 32 is probably you pulmonary artery pressure. Have you had an ECHO or right heart catheter recently?

I'm sorry you are having to go through all this. Hopefully it will help which will make it all worth it.

Big Hugs,
Janey Willis
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#5 KarenL


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Posted 07 February 2008 - 06:11 AM

Hi Janey,

Thanks for responding. I've had three heart caths in the last two years. I have Coronay Artery Disease and they think it's related to the sclero. I've had three blockages in two years and three stents. The rheumatologist is sending me for an echo right away, I've had them before...but he wants a new one. Thanks again...it really helps to run this stuff by the group here!!

#6 CraigR


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Posted 07 February 2008 - 09:45 AM

I had a PICC for several months for treatment of chemotherapy for lymphoma. It had to be flushed regularly (I think daily) with saline.

I got used to it with time. I took a tube sock and cut the toe out to use as a a protector for the line (in the upper arm).

Later I had a larger central line put in for a stem cell transplant.


#7 adensmore


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Posted 08 February 2008 - 04:58 AM


Has your doctor looked into why you are so anemic? I was severely anemic 2 years ago and my rheumatologist had me tested for Watermelon Stomach. Sure enough I was bleeding from my stomach. I had no pain, no symptoms (other than being tired). Now I go to the gastroentrologist every other month to have my stomach cauterized.

I have a port a cath. They originally wanted to give me a PICC line but since I have no visible veins and they can't get an IV in me at all, they decided on a port. I really love it. It's just below my clavicle on the right side of my chest. I had to be put to sleep to get it, but it was no big deal. I would highly recommend a port because it doesn't require any care, other than getting it flushed once a month, and you can keep it in for years. I've had multiple blood transfusions in it, a RN can draw blood from it, and they use it to sedate me when I'm having a medical procedure. No more multiple trys to get an IV in or trying to get blood for labs. I don't know what I would do without it.