Accessing IV Saline: A lesson in futility.

(IV Tequila is looking good right about now. Source)

Back in January my cardio finally gave the okay for regular IV saline. The idea was that it would give me a burst, and that all going to plan, I would then be able to also start a basic reconditioning program (thanks to my dodgy health and malabsorption issues I have lost a large portion of my muscle mass, I only just scrape into a BMI of 17 these days). It was something of a personal coup. IV saline, although fairly common in the US as an adjunct therapy in various Dysautonomias, is simply not done as a regular treatment here in Australia. Once you reach the fun point of complete bodily meltdown you can generally access it as a treatment in your local Emergency Department (ED). But as a regular preventative treatment, well, it simply rarely happens.

There is a large body of both anecdotal and scientific evidence that it is helpful. Hypovolemia (low blood volume) is extremely common in Dysautonomia, as is chronic dehydration. I currently take medications to both increase my deficient blood volume and stop me peeing out my precious fluids every three seconds. IV saline bypasses the dodgy parts of our bodies that refuse to absorb fluids, to directly access the veins and increase blood volume. For many this means being able to function. It also means being able to exercise and gain back some strength, which in turn helps with blood flow and general health. Bonus.

I am constantly on the threshhold of dehydration. On hot days, of which we have many, no matter how much I drink I remain dehydrated. My body simply refuses to absorb oral fluids and I might as well just pour them straight into the toilet bowl. Case in point: last week on yet another stifling day I drank nearly 5litres of fluids and still my lips peeled and my skin was lax and I could pinch the skin on my hands and it would simply stay up in that position till I rubbed it down. I felt like death. Simply put I was ridiculously dehydrated.

Whilst, the idea of being stuck with a needle on a weekly basis is not high on my list of fun things to do (a port is out due to my high infection risk) I am happy to do it as a trial for 2-3 moths over the worst of Summer. 

The risks of IV saline are minimal. Especially when compared to many of the drugs I have tried over the years whose potential side-effects include fun things such as stroke or hypokalemia (low potassium which can in turn lead to a heart attack). 

All in all it sounds like a good option. I also have the support of both my cardio (who is my primary coordinating specialist) and my GP.

Yet....

Today is the 5th of march, 2 months later, and I still haven't been able to find a way to access IV saline on a regular basis. 

Yesterday, I went back to my GP to be told yet again that she had not found a way for me to access IV saline. This is not due to any lack of diligence on her behalf. She is very supportive and has gained support from the clinic head to try and find a way for me to access this simple treatment. Only one problem, there is no where in my local area that is currently able to give me a litre of saline once a week (travel is difficult for me now and any beneficial effects of the saline would be negated by the impact of travel on my touchy body). 

My local dialysis/infusion centre is filled to overflowing. Of the local GP clinics that have a nurse on site, none have the room available to let me sit for 2-4 hours of infusion. Hospital in the Home, a program designed to keep people out of hospital, requires an admission under an in-patient hospital clinic to be eligible in the first place. Private nursing to come to my home is not financially viable. Admission to my local Private Hospital ED would cost me almost $300 for one litre of fluids. My local Public Hospital ED is a less than user friendly environment, plus the risk of picking up a bug is high. 

My GP continues to search and I am grateful she is on my side. But the fact that it is looking like I have more chance of winning the next Tattslotto jackpot than accessing IV saline, is starting to grate.

I can access expensive and potentially dangerous prescription medications with the swirl of a pen, yet I cannot get a comparatively safe and inexpensive litre of salty water shoved in my arm. The craziness of such a system is not lost on me.

I do know that the last time I had continuous fluids for 5 days in hospital my bp sat at around 120/70 for 5 days and my hr in the 60's. My GI remarked at the time that IV saline worked better than Florinef, my main medication. That five day period is the only time I have had such readings since I became sick back in 2006. I should add that was at the time my gastric system gave up the ghost and I lost 16kgs in 2wks. Those fluids worked like magic against incredible odds.

Having regular saline infusions will not cure me. It will not make me fully functional. It will not get me back to work. I not asking for a a port as I know my immune-system is toast. I am realistic in what it may or may not provide me. My health picture is complex and multi-dimensional. But IV saline has the potential to remove at least a part of the many obstacles my body faces. And lets face it the removal of any potential excess disability should be seen as a positive. 

It is hoped that the single litre of fluids will give me the boost I need to exercise and gain back some strength. But it's potential goes far beyond that one basic rehabilitative goal. It may also allow me to leave my house by myself. To pick up my son from his bus stop. Or even go to my local supermarket and buy a litre of milk. To the bureaucracy and politics that are currently stopping me from accessing IV saline that may not mean much. But for me and my family it would mean the world.

I do everything my specialists require of me. I take my meds, I follow my diet, I exercise when I can, I use all the aides they suggest, I make sure I get out and potter in my garden, or write my blogs, or cook, or paint. I don't wallow in my illness and am in no way non-compliant. All of this keeps me semi-functional, but I am at a plateau, a plateau that is slowly edging backwards. 

As I sat in my GP's office discussing the issue once more I could feel the tears forming. Not because I am sad or depressed but that I am frustrated to the point of tears. That such a simple and cheap request is being denied by obstacle after obstacle. 

I am told to take control of my health, to be informed and to seek out the care I need. I am lucky that my specialists are supportive and work with me. But their hands are as tied as mine. The insanity that I can buy bags of saline and all associated paraphernalia on ebay is not lost on me. The fact that if I was wealthy I could access this simple option with ease is not lost on me either. I don't know where else to turn, and I am at the point where I must consider that IV saline is simply not a viable option, just like Ocretrotide or IVIG before it.

It is not the physical aspects of my illness that are necessarily the hardest to bare. It is the constant battle to access and naviagte often basic health care. A battle that continually stretches my already over-stretched physical and emotional reserves to breaking point. It's hard to not become cynical and jaded in dealing with a medical system not designed for chronic and complex conditions. Part of me thinks that the system relies on people like myself and others in my position, ending up too tired to keep banging on about pursing such options. Lets face it the medical bureaucracy is a machine that just keeps ticking. It can wait me out. It'll keep on ticking long after I've collapsed from exhaustion and given up the fight. Part of me also knows that there are good doctors and other health professionals who want to help me, but simply can't. I know that must be frustrating for them too. To know there is a care option that may help their patient and yet they simply can't facilitate access to that treatment. And part of me is just completely over playing the roll of Sisyphus pushing my boulder up the bureaucratic mountain. I really don't want to play this poxy game any more.

I wont let this break me. But I may need a few more rolls of duct tape, a hot glue gun and a great deal of MacGyvering to keep holding my dodgy pieces together. 

Michelle

Highway to Hell by AC/DC just seems so appropriate right now.