Well yesterday I did my walk-in to the ER, amazingly that time just kind of flew by between having the PA check me out, to a nurse that access me without a hitch and having an radiology nurse come down to check me.
When I got access and check for blood return, there was very little . . . There was slow movement with the blood, almost like clumps from my dad's point of view. For me I just really couldn't look because all I could see was bad news and not much else.
When the radiology nurse came and tried it, the blood return still was the same so we went on down to Radiology Intervention and did TPA. So as we waited anxiously for 30 mintues to come, when the time did we still were having issues with blood return. It got better but not like it should be.
So we went ahead and did the dye test, overall the port is working fine but there may be either a clot or fibrin sheath that is causing all the problems. It's like for example I don't feel any discomfort when getting a flush when my head is turn away but I feel a little discomfort when my head is turn facing forward.
We did another round of TPA and waited 2 hours, during those two hours my dad and I went to say hi to some old friends on short stay and then headed out to eat at Wendy's then stop by shopko since it's right next door.
We return back and the blood return was again a little hesitant but if might be due to the nurse didn't do an flush first then check for blood return. So can I say that the second round works? That I'm not sure but even after the dye the Radiologist that read my dye test said that there's nothing that would indicate a problem or no reason why I can't keep using the port.
So in other words, we won't know how things goes with the port until my next infusion which is next Friday. You can say that my nerves and being anxious grows on my mind as my infusion day comes closer.
I wish that somehow that there were more definite answers to reasons why I was having issues but again if it is fibrin sheath which most likely is, that there's really no way to dissolve it if it's on top of my port and not within the port itself.
My dad did some research on the new and improved ports nowadays, I think if we need to change out the port I will get a new one. After just talking with my parents and talking with a lot of people from the CVID facebook group that I would hate to start having problems and reactions/side effects after going for 17 years without them.
But at least one thing came out of this little trip to the ER, I did get heparin after not being able to get it at my last infusion.
Showing posts with label Port. Show all posts
Showing posts with label Port. Show all posts
Wednesday, June 29, 2016
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
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
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