Friday, January 23, 2015

How do you Administer your IG?

Did you catch that IDF Advocate newsletter about Infusion ports? IDF Advocate Newsletter I have had my port (my only one for nearly 15 years) There's part of me that has an few issues with this, I understand that Sub-Q is becoming more probable for patients. 

However if you put it in a sense of where a patient is needing 80gram of IGs or more, you have to think how often that patient would have to do it. When my immunologist brought it up, he did the math every other day for three weeks because of my dosage. Now I do IVIG via port-a-cath at my short stay clinic/hospital, and I do that every 21 days (every three weeks). 

Now if you ask me, my odds are better with the standard IVIG via Port because I won't have to worry about the constant poking and because I have Evans, with that I would most likely have more bruising sites with Sub-Q since Sub-Q is done wherever the patient is most comfortable placing it as well. Plus the number of times I would have to do it every week. 

I gotten the port place in 2000(?) because my veins were completely shot from the IV and it gotten painful as well. Trust me I think I was traumatize by the end of the first year when I first started IVIG, now I'm sure my veins are grateful that I got the port just because they had the time to build up again and remember veins are fragile! 

The only "bad side effect" I had with my port is the post-op, when they check to see how it was doing after a week of placement and also check to make sure nothing was wrong. I had develop a clot beneath the port, although that clot haven't done any harm to me probably because I take coudamin. But to this day I never had any related problem with that clot that developed under my port. 

The only issues I tend to get is scar tissues which is to be expected and I had some sort of reaction or something that my immunologist wanted to do a blood culture from the port and that turns out fine. I've had one incident where getting an access was and seem merely impossible but that occurs when I gotten sick in mid 2013 and during at one point I stop taking coudamin for almost a month but we kept tabs on my INR among other things because it was a really horrible "event" I had but again wasn't related to any port issues it was probably the matter of fact that I wasn't taking coudamin. When I did restart taking coudamin again the access went just fine after that.

I guess part of this is just my personal experience with my own port and I'm probably one of the lucky ones to have a port for this long. But you could also look at it that I'm lucky I didn't develop any of those horrid complications especially with all the conditions that I do have.

To this day I'm thankful and glad that my port is doing so well and my immunologist used that common quote about fixing things "If its not broken, don't fix it."

So am I against Sub-Q? As of now yes, because it's just doesn't seem reasonable for me to switch to Sub-Q with the dose that I receive as of now. If Sub-Q works for you great! but if you're one of those that don't like it then try to covert back to doing the IV. 

If doctors are not in favor of ports anymore then that's fine but for me I would never go to Sub-Q and I don't know how long I could do IV if I had to. I'm still just very grateful that my port has lasted this long, it works like a charm.

~ Kat

Sunday, January 11, 2015

Infusion Day

This will be my first infusion blog that I have done in a long time, I  had used to write Infusion blogs on an old blogging site but I wanted to part from that. So now with the Zebra Divas I thought why not post an Infusion Day post.

To start off, I don't do home Infusion . . . WHY? you might asked is mostly because my home setting isn't suitable for sterile field too much clutter.

Another reason why I don't want to do home infusion is because I would miss my 2nd family that I have at Scared Heart, I'm like their 2nd/3rd/4th daughter to them. But also it's my comfort zone BIG TIME.I know at some point I might leave that comfort because of life changes.

So you might wonder what I do (AT) the hospital while I infused . . . A Computer, Ipad, Iphone

Typically I write (I'm a writer can't you tell?), it doesn't matter which book I'm working on I just know that I have to write or WANT to write.

Every once in awhile I will watch TV mostly for Cupcakes War (if its on) or Say yes to the Dress shows and sometimes whatever TNT is playing. 

I listen to music on a very regular basis, I'm almost never anywhere or doing anything without music playing. Then I get a visit from the spiritual people, we talk and then we say or well he says a little prayer for my life journey because I'm always doing something new that is towards my life journey down the road. 

Well that's pretty much what's goes on during my infusions, I'll share a old story of how I used to spend my time while doing my infusions so long ago.