Wednesday, June 29, 2016

Updates on Port

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.

Tuesday, June 21, 2016


June 17th, Need some prayers in these next few days, three weeks ago there were issues getting me access however I did get access and had my IVIG. But yesterday, none of the nurses could get me access as they each felt resistant and the needle wasn't going through like it usually does. Monday my dad will be spending most of his day making phone calls to the doc that put my port in 15 years ago, and to my primary physician since he was not working yesterday (FYI almost no docs works on Fridays apparently) 

I've managed to get a hold of my immunologist yesterday after my dad called the triage nurse who doesn't know the difference between it being an urgent call or something else. I actually call the receptionist where you make appointment and told the women about the urgency that he needed to call me ASAP. 

My dad and I talked with my immunologist, and the reality of the port is that maybe it's just time to have it out. It gave me 15 years and 7 months, weirdly enough I'm not getting an biological signs like a lot of people do. It's really all Mechanical from this point, there's no redness, nothing that my skin is showing signs of an issue. 

So I'm kind of thinking and as a family decision, that the Port is going to have to come out rather than potentially fixing it. We are going to try and get an ultrasound scheduled to see if we can see what's going on because we won't be able to do an dye test because of the issues with the port. 

So what's my next options? My immunologist suggested Sub-Q but with the amount of grams I get that it would be near impossible to do plus I could get more of a reaction and/or reaction Plural with Sub-Q than how things are now with doing it every three weeks for four and a half hours. 

So yesturday how it went with me getting my infusion is that the wonderful nurse name Shelly, who actually used to work for Red Cross looks at my arm and saw some pretty good veins. So she prep me and I got my stuff via antecubital vein. 

So the odds are that my next infusion, it will be another IV in the arms or hand if I can, we will be looking into PICC but for right now I think we'll do the regular IV method. 

As of June 21st, there hadn't been much set in motion about getting an ultrasound or anything done. I will share details when I can.