To get a cath port or not?? | Arthritis Information

 

I don't post much anymore but I read up at least a few times a week!!  The remicade treatments for my sarcoidosis are going ok.  They doubled the dose last month and it did help more and for longer.  I just had another infusion this morning.  The girls always complain about what a hard stick I am for the IV's and even just when I get a blood draw.  The nurses at the hospital REALLY want me to get a port put into my chest.  They had to poke me 6 times and blew three veins today.

There were a couple of old ladies getting their chemo in there and they were more than happy to show me their ports.  They say they don't hurt once its healed but its a rather good size lump under the skin and I think it would bother me?  I am very sensitive to things, such as tags in clothes or the fit of my shoes, the seam in my underwear (LOL but true!) so I am a little nervous.

I also worry about the risk of infection and blood clots as I have had blood clots in the past?  I was just wondering who has ever had a port or known something with one and did they have any problems?  Anyone else on remicade who has been told to get one?  I get my infusions every 4 weeks.  Thanks!
I've worked both in the hospital and at home with patients with ports.  They are great for frequent infusions.  Both for the infusion AND lab draws.  Draw backs are, they still hurt when we access them (it's a poke), only RNs can access them and lab personnel usually can't, and when they aren't being used, they must be accessed monthly to flush with saline and heparinize.  You can put on emla cream to help with the poke.  It is a cream applied about 45 minutes a head and covered with a tegaderm that numbs the skin.  Your dr. can write a prescription for that.  You can get your lab tests done at your physicians office or you can have home health care RN that will do labs AND monthly maintain your port (depending on your insurance coverage).  I've seen relatively scarce problems with them.  I had a patient that had hers in for 6 years and just got hers out yesterday because she is no longer using it.  I hope this helps.I have a port and I got it for remicade originally.  Like you I don't have very IV friendly veins and infusions every 4 weeks just did them in.  I've had it for a little over 2 years now.  Its great.  The insertation of the needle doesn't hurt past the poke its easy to move around with.  There is a bit of  lump there but you really don't notice it unless you are touching that area.  Its not like a seam rubbing .  It usually goes right below your collar bone so clothes don't really sit right on it.

There are lots of options.  There's the port, groshong, picclines. You know what the port is like, under the skin and so when they want to use it, they have stick you in the spot where the port is. Groshong it a lot like a port, it's inserted in the chest but they leave a small bit of the catheter outside the chest so you don't have to be stuck. The picc line is usually inserted in the arm just like an IV is but the catheter that stays in your vein is longer and therefore lasts longer. The port anf groshong are more long term than the picc. I'm sure your doc can give you all the advice you need to be able to pick the one best for you.Ports are great, much better than PICC lines. Much less likely to get infected. I say go for it. You will be happy with that decision. Ask for EMLA cream to apply to it an hour and a half prior to the stick as it can sting. The EMLA will numb the area and make it a better experience. With the trouble you have I would think a port would really be a great solution. I have a piccline right now for iv meds because I have meningitis... It's fairly easy to manage, but it is itchy which is annoying. I thought it would be hard to get used to knowing there was something inside of my body that really isn't supposed to be there, but it only took me a couple of days to get over that. Let us know what you decide to do. graciesmom. some at home advice for you if this ends up being way long term. Do as much of the picc care yourself including flushes etc to avoid foreign bugs. this will cut back on chance of it getting infected.I have to say we are so lucky to have you members in the medical field!!!!!  Thanks for being there for us all.Wow,  thanks everyone!!!  I talked to my pulmonologist this morning and he said that I would be considered high risk getting a port because it raises the chances of getting blood clots.  Even with the monthly heprin flush, for some reason your body is more prone to making blood clots.  Since I was just treated for PE's and DVT's, he said he will only do it as a last resort on me.  I am ok with that, I really don't want to go through the whole blood thinner regime again.  We both agreed that we would give it a few more months and see how it goes.  If they continuously have a hard time with the IV's then we will talk to a surgeon about it.  I don't mind the pokes so much, I am not at all squeamish but when the vein blows it really fills up under the skin with fluid quickly and that takes some time to heal and is a bit painful.  I actually had an IV sewn into my femoral artery when I was in the hospital last fall and when that blew, they did give me a PICC line but removed it hen I was discharged.

Also, my heart MRI was ok!!!!  YAY!!!  I can now stop my heart medication and I will go in in 3 weeks for a 24 hour heart monitor to see how my heart reacts without the meds. I am happy to be able to start cutting out pills instead of adding them in!!

Pretty busy at work today, will try to catch up on Monday.

Lorster, thanks for the advice. I am taking 2 different antiobiotics twice a day, and flush with saline before, inbetween, and after each and end with heparin (sp?). Does that sound about right? I go to the infectious disease doc once a week to have bandage changed and piccline area cleaned. When I was there yesterday there were a couple of older patients there. The nurse explained that medicare patients were not able to do home health care for the infusions, that the only way their medication was covered was if they came to the office for their infusions. Isn't that ridiculous and inconvenient?HI Michele, [QUOTE=graciesmom] Lorster, thanks for the advice. I am taking 2 different antiobiotics twice a day, and flush with saline before, inbetween, and after each and end with heparin (sp?). Does that sound about right? I go to the infectious disease doc once a week to have bandage changed and piccline area cleaned. When I was there yesterday there were a couple of older patients there. The nurse explained that medicare patients were not able to do home health care for the infusions, that the only way their medication was covered was if they came to the office for their infusions. Isn't that ridiculous and inconvenient?[/QUOTE]


graciesmom. yes, very ridiculous and inconvenient not to mention more expensive. It s a small part of what is broke with the system. Medicare does not cover medications once you leave an institutional setting. I thought that part D would cover that but apparently not. I hope that some of it gets fixed. What you are doing sounds right. I hope you get it all taken care of and have the PICC removed soon so you can enjoy your summer without it.Just for the record, I got all of my cancer chemotherapy via IV. Looking back, it's six of one and a half dozen of the other. I elected for alternating arms for my chemo which was every two weeks over a six month run. My idea--I was complimented on the strategy by my nurse and oncologist.
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