At my most recent neurology appointment my doctor and I had been discussing my symptoms and this ‘flare’ of sorts I’ve been in since having surgery in October. It seems as if the surgery just really aggravated all of my conditions, but my MCAS and POTS most significantly. Other things flaring can be attributed to the never ending winter we’re experiencing or something rational. But the MCAS and POTS being in such a long and poignant flare have just taken a huge toll on my body. Couple that with a baby who is now 7mo and hasn’t ever been able to sleep through the night due to her own medical issues…. disaster. You may remember my self IV posts or maybe have seen my Instagram posts and that was getting old. Do you know how difficult it is to start an IV on yourself when you’re chronically dehydrated? Oooof!
So, we made the decision to put in a central line of some sort to get regular IV fluids and see how it goes. Now, from what we know about central lines and auto-immune disease it’s definitely a case of benefit must outweigh the risks. After all was said and done, I left with an order for home health, a central line placement, Brain and C-Spine MRI and some labs. It’s been quite the fiasco getting this all accomplished in our small town, so it’s been a lot of coordination for care 2+ hours away. BUT, it’s in and it’s helping so I am THANKFUL! What is ended up having placed was a dual lumen BARD Powerline CVC and it’ll be with me for a while. The kids are having a naming contest which has been pretty hilarious. It’s been nice to be able to hook up to fluids while continuing on with life and parenting instead of being tied to the bed or worrying about when I’ll be able to manage to stick myself again!
Does anyone else use a TAC, PICC or CVC for regular fluids to help your POTS? I had heard it’s becoming more common because many of us seem to just sit on this very thin line between normal dehydration and hypovolemia. But even with all of the research I’d done, I was still wondering if it was going to help as much a I was hoping. Well, the recovery itself has been okay. Some ups and downs as my body decides wether or not the invader stays or goes. HA! But, the hydration 5 days a week has helped my POTS symptoms dramatically.
Not long after I got home I actually saw a research update post on Dysautonomia International’s FaceBook page regarding POTS as a possible cause of Cerebrospinal Fluid Hypovolemia. The article is exactly what my local practitioner and my neurologist are currently wanting to rule out. While it doesn’t sound like an awesome diagnosis to add on the pile I found it to be a relief that they both are treating with what seems to be the best/latest research. Anyone with illnesses that are not well understood or are not grossly funded with an abundance of research can understand that the need for new information is necessary for any of us to make progress in self-advocacy. I believe it is also vastly important for our treating physician’s knowledge and growth. A lot of groups I’m in online and pages I follow speak often about self-advocacy because POTS, MCAS and EDS are not widely understood and often many areas are lacking physicians and practitioners who can properly treat their patients. If you have POTS or ay form us Dysautonomia and aren’t following Dysautonomia International’s FB or IG I would highly recommend it! Dysautonomia International FB Link HERE!
I hope you’re all doing well! Don’t forget to leave some comments on PICC/TAC/CVC line usage if you’ve had one or are using one now. Let’s share some tips and tricks!