Tuesday, 5 March 2013

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. 

13 comments:

  1. So true Michelle and so well written as usual. Such a seemingly small thing but the difficulty in obtaining it almost eclipses the benefits. Last time I went in for fluids it was a 9 hour round trip and I only went because I was having shocking chest pain and couldn't stand. I only ever do under those conditions because it's hardly worth it otherwise even though having it earlier could prevent getting to that stage. If I'm not severely unwell they wont even look at me in the emergency department and I can not afford to go private for fluids even though I have health insurance, it doesn't cover emergency department fees.
    I really hope you find something soon - IV fluid really is the best everything, why is that so hard for health care to see?! Why do we have to be virtually unconscious to be entitled to having a litre of IV saline!
    Have you tried a day oncology facility? When it was suggested I go in for IVIG infusions it was going to be at a day oncology centre. They're also pretty good at cannulation there so added bonus :D
    Hopefully the hot weather will go soon...

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    1. I hate that so many of us have the same story. And that's why I avoid the ER unless on death's door. The 9hr waits, plus exposure to more germs for our lowered immune systems it is sometimes such a toss up of whether to bother or not. I did find that my local private hospital would gladly give me weekly fluids but I'd have to pay $350 each time for the privilege. Which is way beyond my meagre budget. My GP is still ringing round and even Mr Grumpy got on the phone and it's no's all round. Poorly serviced out this way :( I hate that we have to get to the point of being so unwell to gain access to it, when a preventative administration could avoid it. Which means we don't need to clog up ERs or end up in hospital. The only time I ever retain fluids is via IV, orally it's straight through without taking DDAVP which has it's own set of issues. Arghhhhhh..... xx

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  2. Michelle... Well written. My daughter has a port and gives herself iv fluids whenever needed.
    Another option might be a picc line? You give yourself iv fluids and visit the local place for a change of dressing once or twice a week? If you could get it so you were doing it and not dependent then that would solve a lot of problems. I agree though... the fight to get saline for us was massive and we are in the U.S. It was not an approved protocol.... is more common now but still not considered an approved protocol so many doctors shy away from it. Persistence when you are oh so tired is tough. We are not asking for major expensive drugs...... It is sadly crazy. I pray you and your supportive doc can figure out a way!!

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    1. So glad your daughter can access IV saline regularly as I know it helps so many. I can't do a PICC for the same reasons as a port, and I'm okay with that, but it does mean I am am reliant on someone else to do it and that's the kicker. I am luckier than others here in that I have supportive medicos and a supportive husband who has also been on the phone, but so far still no saline. It does get exhausting emotionally always fighting. xx

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  3. Both of my 16 year old daughters run 2 liters of saline a day, at home, via ports. We did the whole go in once a week and our doctor let us go home with the iv and we infused for 72 hours, then I pulled the iv. Then we did a PICC line for a month and we ran iv's everyday. The results were amazing. As close to miraculous as we have gotten with Dysautonomia medications. We did have ports surgically implanted because of the benefits. Lucky me, the mama, I now get to poke both my daughters in the chest once a week. Did I ever think I would be able to do this....not a chance.

    One daughter has been sick for 11 years and was totally bedridden nearly 8 years of her young life. After about a year of daily iv's she finally began to get better. She has done more this past year than in her entire childhood. She doesn't run iv's for about 2 to 4 days in between so her site doesn't get too sore. She starts to have way more symptoms after 2 days. It is crazy. I know she would be bedridden, if not for these iv's. The funny thing is, some Dysautonomia groups do not support iv therapy and won't let you discuss it on their forum. That makes me so angry because as a mom, I would want to know of anything that might help my daughter. In fact, her favorite group would not let her attend their national convention in Washington DC because she relies on iv therapy...and all this after a service group had raised thousands of dollars to send our entire family to the convention.

    Her twin sister got sick with Dysautonomia right as she was beginning to get better. She had been a ballerina, dancing 3 nights a week and has basically been bedridden now for almost two years. She just got her port in December and has been able to get up and out some, more than in the past 2 years. She is still very, very sick, but daily iv's give her the chance to do just a few things that she would stand no chance of doing without the iv's.

    The medical system makes me so mad. Dysautonmia is a robber of life. IV's are so simple...really. Yet my sick daughter was turned away from a group that had brought her such comfort and support just because she ran iv's through a port to function. Well, that is not my reason for posting, so I digress... I will be praying that you find a way to get iv's! The results you saw in the hospital are very indicative of how regular iv's would help you (based on experience with my daughters). Keep fighting. Don't give up. ~Kerry in the U.S.

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    1. Wow Kerry that's fantastic how much it has helped your daughters. But I am truly saddened that she was unable to attend a conference thanks to opposition about IV saline from a patient group. I don't understand that kind of attitude. Surely we should be supporting each and every patient in their treatment choices whatever they may be. Life is hard enough without patients and support organisation hurting each other. Thanks for your support. I'll keep plugging on who knows it may happen, but it is going to be a long hard journey to get there xx

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  4. Gosh, I hadn't realized how lucky I was to have access to this. The only impediment I have run into is scheduling. I'm still trying to work full time, so finding time to schedule IVs is tough. I also try to hold out and do them only in the summer. They help. I do wish I could do it at home. I think if I could pump in a few liters during evenings at home, life would be a lot better. I hope you and your doc find a way for you to do this. It sounds like you've got a good handle on the problem, just need someone to help with the solution. I'm hoping you can get it.

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    1. So happy to hear you have access to it, Badturns. I'd be happy to just do it in Summer, especially given how hard and long our Summer has been this year. That was the original plan but now we're in Autumn and still not sorted :(

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  5. Ugh. Oh, Michelle. How frustrating to finally find something that really helps you, only to have it so inaccessible to you. The system is broken.

    This is just more evidence that social issues govern health.

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    1. The system seems to be broken across the board Ashley. Time and again things that could help are inaccessible thanks to finances or lack of services. I think what frustrates me most is that I want to take control of my health, am happy to put in the hard yards and try to minimise my disability and maximise my functioning, all the things we are told to do, but the system really isn't set up for complex, chronic illness.

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  6. Blogger ate my original message. I wrote that it must be so frustrating to finally find something that really helps you, only to have it so inaccessible. The system is broken.

    This is just more evidence that social issues govern health. I think you should fight this.

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  7. Reading this is so hard emotionly. The frustration just gets to the point where you just want to shake the doctor. On the outside I look fine. Inside fighting a battle which some days I feel I am losing. I don't let my illness stop me either. I have to keep doing what I am doing at a pace..

    It gets so hard to do everything they want. I commend you on it. I try I just refuse. I am slowly realizing that I really need to face reality. Slowly...my reality is different then what I am being told. Here in the US if you look fine you are fine. If you are 42 you are abled bodied and don't need assistace. My pain management doctor is a jerk. Oh well your body is so badly damaged I don't know if I can do anything for you...Yeag I have to deal with it too. I go home and just cry....


    I may be broken but I am still here I keep telling myself when a so called professional wants to be stupid. One day just one day I wish they had to live a day in our lives. Just one day....hugs

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  8. Reading this is so hard emotionly. The frustration just gets to the point where you just want to shake the doctor. On the outside I look fine. Inside fighting a battle which some days I feel I am losing. I don't let my illness stop me either. I have to keep doing what I am doing at a pace..

    It gets so hard to do everything they want. I commend you on it. I try I just refuse. I am slowly realizing that I really need to face reality. Slowly...my reality is different then what I am being told. Here in the US if you look fine you are fine. If you are 42 you are abled bodied and don't need assistace. My pain management doctor is a jerk. Oh well your body is so badly damaged I don't know if I can do anything for you...Yeag I have to deal with it too. I go home and just cry....


    I may be broken but I am still here I keep telling myself when a so called professional wants to be stupid. One day just one day I wish they had to live a day in our lives. Just one day....hugs

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx