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Post by klw1960 on Dec 3, 2009 9:44:50 GMT -5
As some of you may know I am doing IVIG for my SD. My arm skin is tight and my veins are getting harder to find/poke. I am considiring having a port put in my shoulder. I had a PICC line for 6 weeks this summer for antibiotics and had to have it pulled as my skin starting breaking down. Does anyone have a port for bloodwork or IV treatments? Will or can you share your experience to help me in this decsion. I am worried about complications from my skin being so tight....
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Randy
Junior Member
Racing Gloves on!
Posts: 81 
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Post by Randy on Dec 3, 2009 10:58:10 GMT -5
I've had lots and lots of IV's - 127 Clindy IV's to be exact! That's about 2 yrs of monthly IV cycles. I used to keep the IV in my arm so I would only get 2 sticks per 7 IV's. Now I just do "poke and outs" as my skin is so much softer now and my veins are much better and easier to find. Additionally, I sleep much better without my arm wrapped up with an IV in it, and I can take showers and baths and swim, etc. Additionally, I won't have people coming up to me and asking me what I did to my wrist.....
Now, although my skin is better now, the more important part of successful IV's is the nurse's experience, skill, and eyesight. Over and over I talk to folks who are having problems with their IV's and it is mostly due to the Nurse. Don't settle for bad sticker's, and don't worry about their egos.
I'm sorry I didn't answer your question about Picc vs Port; I just don't have personal experience there.
Randy
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Post by jeffn on Dec 3, 2009 12:35:33 GMT -5
Sorry I don't have any insight about the pics or port. I do agree with Randy that the tech is very important. There used to be a guy here that was awesome. He could get blood out of a stone as they say.
Really off topic but was curious if you would consider posting on a regular basis about your IVIG experience. How long have you been on and what changes so far? We are always interested in hearing about different treatments. If you could start a thread about that it would be interesting.
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Post by Cubby on Dec 3, 2009 15:39:13 GMT -5
I am very excited about your doing the IVIG so, like Jeff, I hope you will post. LAUREN who used to be on our board, and is now on Inspire, did IVIG and Cellcept and went in to full remission after 1 year! Now you know I am an AP person, along with Photopheresis. You also know, I am very very close to remission.
However, I was so excited to hear Lauren's experience which is much different than mine. I just saw her about 2 months ago and she looks great! We both walked with her dogs all thru the woods behind her house. So, I wish you the same great outcome she has.
Regarding the port, can't help u there. However, if they can't get the needle in, you just might have to do that port. Do some more research, tho and let us know how it goes! GOOD LUCK and please post. As Jeff said, why not start a thread for IVIG.
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Peggy
New Member
Posts: 33
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Post by Peggy on Dec 3, 2009 18:12:51 GMT -5
I'm glad you are trying the IVIG. I did it for a number of months and it did bring my CPK numbers down to normal but it didn't do anything for the extreme pain I have in my legs and arms so they were discontinued.
I did have a port put in for them and it was so handy. Mine was located on the left upper portion of my chest. It was so handy. Blood draws are very difficult for me and so many of the nurses have such a difficult time. I just had my port removed about a month ago being it wasn't being accessed anymore. When heaven forbid the lymphoma is present and I need to go on chemo I plan on having it put back in at that time.
I wish you luck on the IVIG. Mine was 8:30am to 5:00 for 3 days each month. I would check into the hospital and I had a private room so I would spend the day reading, watching tv or sleeping (alot of that which I still have to do with terrible fatigue I have). One thing to make sure they do is to do the pre-meds. I got them before they started in the morning and then they were repeated at mid-day. One of the days of treatments the nurse didn't give them at Noon like she was supposed to and I got so sick that I had a fever and vomitted over and over. That happened twice and after that it never happened again as I made sure to remind them to give them to me.
Warm hugs,
Peggy
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Post by steve201 on Dec 3, 2009 22:04:11 GMT -5
I think I'd do what ever made you feel more comfortable...the port can always be removed if it becomes too much for you......if the port would work...or the pic works...but it's really what works for you...
Steve
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lucci
New Member
Posts: 49
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Post by lucci on Dec 4, 2009 11:34:13 GMT -5
Just a question. I was wondering where Lauren was and how come she doesn't visit this site anymore?
Cubby, since you spent some time with her I was thinking that maybe you had some insight on this. I miss all of her research and input!
Lucci
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Post by klw1960 on Dec 8, 2009 11:53:05 GMT -5
I actually have been doing IVIG since Sept 2007 and getting poked each time. I do it every 4 weeks for 2 days and leave the IV over night. It is getting harder and harder to find a place to poke is why I am thinking port. I think the IVIG has helped keep things at bay. I tried to add cellcept but keep getting sick (infections and viruses).
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Post by grammie on Dec 9, 2009 20:37:52 GMT -5
Hi there, I have a port and it has been helpful to me. When dx with SD, my veins were shot and the skin hard. After trying for an hour, was told it was time for the port. But, now I'm glad I did it. It makes the blood draw and any IV's a breeze. I do get the numbing cream to put on the port an hour before a "poke" so feel nothing at all.
Mine is in the right upper chest area.
There are two things that are annoying....
1. When wearing a seat belt, it hits the port so I have a pad to help with that and it works.
2. got to have it flushed every 4 weeks or less so I have to go it for a blood draw and a flush more than I would to the doctors. It is annoying but I'll keep the port thank you!!!
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