Thanks everyone!
I meant to update over the weekend...but I had my daughter all weekend without much help so I was just too tired to even get on the computer and my phone is a beast to try and post anything more than a short post from.
Friday things went pretty well (my second infusion). They put the IV higher up in my arm and that was MUCH better. I'm still having pain in my hand and a flare up there from the iv I had for the first infusion...but I think that's because (of course) I developed a blood clot in my hand from the iv. Sounds like it's harmless except that it will hurt for a while. They suggested warm compresses on it to help but it could take several weeks for that to resolve and stop hurting (fun). Side effects from infusion #2 were the same as the first...tired and headache. At the end of the infusion Friday my heart rate was between 108 and 113 (they took it three times and it went up each time). I told them it's because every time they use the blood pressure cuff the pain goes up and then so does my heart rate...but I'm not sure if they believe me. I was literally just laying in one place for the last 4 hours...the pain is what elevates my heart rate...it happens every time. But anyway...a pretty non-eventful treatment day. The only survey I had to do was to rate my pain in the last 24 hours. They also drew blood (they'll be doing this at the beginning of each infusion and then a couple days after the last one they draw blood again).
Today (Monday)...I had infusion #3. Today...was...torture.
Started with the nurse drawing blood...and missing the vein on the first try. Not a HUGE deal...just hurt a little in my right arm. I've been having them do the IVs in my left arm because while both my arms/hands have RSD...the left shoulder is a HUGE mess since my fall off the ladder so I NEED my right arm to not have extra flare ups because without it I would be dead in the water. Anyway...they have a resident do the IV. The one who came in to do my IV...did NOT really know how to do an IV. First try and the vein blew (it happens)...but I knew he didn't know what he was doing because he was literally punching my arm to get veins to "pop"...everyone always says I have great veins so this has never happened to me. He was not even remotely gentle. He kept insisting he wanted to put the IV in my wrist...ummm...no. I have a huge flare up in my hand...I'm not letting you put a needle in my wrist. So he goes to the underside of my arm but complains that the vein is deep but he'll try...and try...and try...and try. 23 pokes later (I counted)...he had to go get help...but not before popping the needle off and leaving it next to me on the chair. Oh...and he just left me bleeding with no bandaids or anything...and I was seriously dripping blood. Honestly...it was SO bad...I was in agony...but it was also like this surreal comedy of errors and (I feel bad about this)...as soon as he was gone I busted out into tears and laughter both. Maybe the pain made me lose it...maybe it was either laugh it off or pass out from the pain...I don't know...but I lost it and was a mess of tears and laughter. They got a doctor from the surgical center to come and do the IV for me. The spent a while trying to find a vein that wasn't messed up on the left arm, used some special paste and heat to get the vein to pop...but no joke...I didn't even feel the IV go in when he did it. Of course...he almost killed me when he tied the tourniquet on...he did it SO tight and my arm is burning BAD up there with bone crushing pain...but at least he got the job done and we were able to move on. Needless to day...at this point I was at a 10/10 in pain in that arm and it's still that bad. I have a couple of lidocaine patches on the arm now and they sent me home with extra heat compresses (I kept them on during the whole infusion). Me thinks I won't be using the arm for a few days at least and I will probably have to let them do an iv in my right arm for the last infusion...as much as that now REALLY terrifies me...lol.
I felt more tired than usual during the infusion today and actually took a 15 minute nap...I'm guessing just because I was SO drained from the IV experience on top of everything else. Otherwise...everything went smoothly. My HR was 120 at the end of the treatment...but not surprised after all of the extra pain. Actually...I am a little surprised because I would have guessed it would be closer to 150 with the amount of pain I was in. EKGs were normal but did show the elevated heart rate.
They did tell me that some patients feel relief as soon as after the 3rd treatment (but with my flare up I'm not sure I'll be able to tell that soon)...but also that it can take up to 120 for the full effects of the treatment to be felt. Good to know.
Wednesday I go back for my 4th and final infusion...and then Friday I go in for a blood draw and EKG and a quick follow up. I'll let you guys know how it goes. Despite todays tragic comedy of the IV...this has not been a bad experience at all as far as treatments and side effects go. A couple of flare ups, being tired, and having a headache are not too bad at all. If I didn't have RSD in both arms...this whole process would be a lot easier I think.