It's Saturday afternoon and I'm in North Carolina for the weekend. (I live outside DC.) It is extremely hot and Rob and two other families are at the park taking in a walk. I've opted to stay in the air conditioned home with two dogs who are off sleeping. Maybe I'll close this computer soon and take my own nap.
I'm finally feeling emotionally better than I was on Thursday. I didn't talk about it here, but did mention my unfortunate nurse/IV experience on Facebook and Twitter. In short it took 3 hours, five nurses, and nine sticks to get an IV started on me for the Rituxan infusion. Ultimately it was the head ICU nurse and her best pediatric ICU nurse who got the IV started.
Sometimes you really can't control how your body physically reacts to situations. I think it was about the 7th or 8th stick where all the blood retreated from my extremities, which didn't make the situation any easier. Deep down fear will do that to you.
I had brought my own heating pad with me to try to get the veins in my arms or hands to plump up extra large. It came in handy when the ICU nurse was calmly taking her own look for a vein and noticed that my fingers were ice cold despite my arms being wrapped up in significant heat.
She was the nurse who called for back-up and knew who could get an IV started. She was also a nurse who sat with me while we waited, talked with me, and literally held my hand, even stroking it calmly. Now that's a special touch, truly.
We finally got the drip going at about 12:45pm when I had arrived at the Outpatient Infusion Center at 9:00am. It was a long day, but at least I was done in 8.5 hours. Two weeks ago the experience took 10 hours.
This time it took until after 2 hours of Rituxan and getting up to a drip speed of 300ml/hr that I started experiencing the infusion-related reaction. I spoke up quickly, we got more steroids and benadryl onboard, and slowed down the drip speed. I was pleased that my body took longer to get to the reaction which has happened during each infusion so far. That's progress!!
So far Rituxan has been good for me. It has definitely helped my RA and I think that it might be helping my MS too. A bonus with the infusion is the boost of steroids which come with it. I notice an immediate improvement in how my legs feel afterwards which is something I have to talk to my neurologist about. We had talked about maybe doing pulse steroids but were holding off.
One thing which really bugged me on Thursday was that the infusion nurses kept talking about me getting a port installed for easy access to my veins. Of course it would make their job easier. But I'm not so sure I'm ready to have surgery to get something permanently installed in my chest and threaded through a big vein. That just seems so much more "medical" than getting an IV started every once in a while.
Something to seriously consider. Besides having MS and RA, I've been pretty healthy. The only surgeries I've had were to remove my tonsils and wisdom teeth. I had stitches in my leg when I was 8 yrs old. But nothing else.
I guess I'm really a scaredy-cat after all. IV infusions, MRIs, etc don't bother me all that much and I've never really been afraid around needles.....until this past Thursday. I experienced fear.
Fear of being hurt further. Fear of not being able to get my treatment on schedule. Fear of messing with something which seems to be working. I didn't want to postpone, especially since the veins would not likely be any better a day later. I had this trip to take and in two weeks I'll be on a cruise to Alaska.
I've got things to do and a schedule to maintain. I've got life to attend to. Thankfully the ICU nurses got the job done. I was so happy and pleased, and definitely relieved. Unbelievably relieved.
So maybe I should go take that nap. Tonight we will have 8 adults, 6 children, 2 dogs, and 2 hiding cats here for dinner. It's going to be chaos. It's life and I'm staying part of it.
Happy Saturday to all and keep cool. ;)
Oh Lisa, what a scary scenario. I'm so glad there was that one nurse, the one so open with her humanity. Those types of medical folks go a long way in situations like these.
ReplyDeleteEnjoy the Alaska cruise -- I used to live there -- beautiful.
Donna
Hi Lisa: Sorry to read about your IV experience. You had one nurse who was good with you & got your IV started......methinks, you should ask for her all the time! LOL
ReplyDeleteTake it easy...it is getting sooooo hot now.
Hi Lisa, As a former IV nurse/ICU nurse, I agree with you considering a port. Your veins react to repeated use and get scarred and harder to use. A port would offer a larger vein to help dilute the infusion better. It would be fairly easy maintenance but a semi permanent thing sticking out of your body. As a patient I would want to try to get the same IV nurse or ICU nurse but that is not always possible. Good luck. Glad the meds are giving you some relief. Mary
ReplyDeleteI'm with anne, I found a GOOD needle poker (techinical term) and got her name and I make sure she is on shift b4 I go for a poke. I always blamed ME, MY veins, until I met this poker, now I know the truth---it is skill. I asked about veins getting too used, she said, "That's ridiculous. You have many veins and the bounce back." My very first IV doobie (technical again, keep up, Lisa) told me same thing and most RNs to follow who couldn't get a vein or "lost it" always blamed ME/THEM. After some years I found Julie and she is now my poker until one of us croaks. (yep, technical term, you're catching on!) (Now, I am not saying bad things can't happen to veins, but with MSers use, it should not be an issue without mitigating circumstances, and that is what doctors are for. Your situation does not sound dire to me. I was scared to death when they told me my veins could get over used and I might need a port. PS don't forget building your veins...)
ReplyDeleteSo sorry the infusions have been so hard on you! Nine pokes to get an IV in is crazy!! If pain from pokes is a concern, there are topical anesthetics that they can put on a variety of places on your arms and then if they have to fish, it won't be painful.
ReplyDeleteYour infusion center is in a hospital, right? While you may not be able to get that specific nurse to come poke you when you need an infusion, you can tell them each time you go in that you need an IV specialist and not a regular nurse.
My veins are easy to get blood out of, but challenging to get an IV in that will last. I let the regular nurse do one poke, and then ask them to call in someone who specializes in it. I've even occasionally ended up with an anesthesiologist come do the poke, and those are my favorites. :-)
So glad you're getting some good relief from the meds, and I hope you have an easier time next time at the infusion center!