It's been so long since I posted. The last year and a half has been difficult, to say the least, but there is hope on my horizon! This is going to be a little long, but it's life changing to me, so bear with me!
I'll try to fill in the details later, but the short story is that I have been diagnosed with a few Dysautonomic Disorders (which affect the autonomic nervous system... y'know, the one which controls pulse, blood pressure, breathing, etc)
One is called Postural Orthostatic Tachycardia Syndrome (or POTS) and the other is called Neurally Mediated Hypotension (or NMH).
Basically, my heart beats too fast and my blood pressure reflex is on the fritz so my BP is prone to sudden drops when it should actually be rising.
In a nut shell, just sitting upright is difficult for me. Think "running a marathon every minute of the day when you're not lying down!" and "Prone to a light-headed dizzy feeling when first standing up" That's the POTS and it's exhausting!
Then there's the NMH...think "gets light headed and nearly passes out when standing in line/standing around talking at social events/sitting upright at the dinner table/sitting in church/sitting at the computer/bending-then-straightening(I did not realize how much this function is a major part of our every day!)/going from sitting-to-standing or otherwise changing her orthostatic position" and you'll get the basics.
There are only a few treatment options for individuals with autonomic disorders. They know what's happening, they just don't know why! One difficulty patients with POTS face
is varying degrees of hypovolemia (low total blood volume.) We know I'm so affected due to my medical history and due to recent events.
For the last year we've been using compression and diet to try and offset my symptoms. The last few months we've even added medications to help me retain fluids and raise my blood pressure, but haven't seen a noticeable improvement.
Having concluded that I am continuing to get worse, the doctor finally felt we'd reached a point where more aggressive treatment is appropriate. (Thank goodness!) For the last few weeks we've been monitoring how I respond to regularly administered saline IVs (a therapy they know can help POTS patients but which they prefer to use only after having exhausted less invasive options.)
The results have been promising! We know indisputably that my pulse is lower and my BP higher after an IV, but we weren't sure the insurance would cover the therapy for the length of time we need for me to be able to complete the recently released POTS Recovery Exercise Protocol (developed by a doctor in Huston, TX the regimen results in 70% of those who are able to complete it no longer presenting symptomatic POTS characteristics!)
I've been trying to complete the protocol for nine+ months with no success! It's a three month protocol with two months of strengthening and prep for a total of five months, but I can only manage a week at the most before a surge in my symptoms nocks me flat!
My doctor and I have been able to verify that regular IVs help me overcome my "exercise intolerance" (don't laugh, it's actually a symptom of POTS!) and we're hoping that with regular treatment I'll finally be able to complete the POTS protocol.
The only hitch has been figuring out the logistics of regular saline administration and presenting it to the insurance in a way that they'll be willing to approve.
IVs are hard on the veins, and pic-lines make even simple things like bathing difficult. I already have a really hard time with basic grooming tasks; and I need daily infusions, which would wreck my veins, so we'd decided the best route would probably be a chest port. Having the port installed wont be a problem, but providing support for the saline and monitoring of the port could be potentially difficult to get approved.
My Dr has been talking with the home health care companies who normally oversee things like that and working with them to be sure my case has a good chance of approval. On Tuesday we reviewed my health notes, and the criteria the home health company gave us which generally result in a case being approved, and we made sure to document things we otherwise might not have. He submitted my case to them the same day.
Guess what? I just got a call from my Dr's office scheduling me for a pre-opp eval (tomorrow!!!) with the surgeon who'll be installing my port! The home health company doesn't anticipate any problems with my case and told my Dr it looked good!
I'm so excited I could pop! So many forums, blogs and websites where POTS is the topic of discussion have posts or threads in which patients talk about the turning point in managing their illnesses being when they started their IV therapy. And I'll be starting mine, soon!
If I had the strength to dance, I totally would!!! Watch out world, I'm on my way to recovery!
