Meet my precious Pablo

Medical equipment is a pain in the butt! But given it's still Dysautonomia awareness month I thought I'd introduce you to one of my more hidden pieces of equipment that helps me get by.

His name is Pablo the power port and I keep him very close to my heart. Infact, he is actually in my heart (well the top of one chamber anyway). He is a central line and I love him! 

To give a very brief rundown, a portacath is a central line that is implanted under the skin in the upper chest which runs from a special septum into a catheter tunneled under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein) and then usually finishes in the superior vena cava. It appears as a small bump under the skin, and a small scar from the insertion. Most people probably wouldn't notice it's even there under clothes and it is quite discrete when not in use which I really like. 

I had to get a port or some form of central line because after years in hospital and countless blood tests, IV medications and treatments my veins have gone on a permanent holiday. They are completely useless, except for occasionally one little bugger in my index finger which can draw blood...but it's a pain and very unreliable too. It became too difficult to cannulate me and so we changed to PICC lines for a while, but I got sepsis from it so we decided on Pablo.

Yes it hurt, but the skill to place it =100%

I receive regular intravenous treatments so when we ran out of veins central access just made sense as the only logical step.  It is not a light decision to have a central line placed as it comes with huge and potentially life threatening consequences, of which I have experienced first hand. There are a few ongoing reasons that I needed Pablo in my life and they are all linked to my Dysautonomia. 

The most important reason I have a port is because I receive regular blood transfusions of plasma and antibodies in the form of IVIG, which stands for intravenous immunoglobulin. Each treatment I receive more than 5000 different peoples' antibodies which flood my own body and reduce it's ability to attack itself. This treatment is slowly but surely helping me regain some of my life and I couldn't be more grateful to the amazing blood donors, Red Cross and my amazing doctors who make this possible. We call it liquid gold in my house as it is so precious to me to have something that is finally allowing me to see some gradual improvements.
Another reason I have Pablo is because I receive IV fluids & electrolytes that increase my blood volume so that my body has more blood to circulate around which makes me feel a bit better. It is actually one of the most effective and common treatments used for POTS and Dysautonomia in general in America, and pretty much worldwide, but for whatever reasons, Australian healthcare makes it much more difficult to access (which I feel is ridiculous)! I am grateful to have some access to this, as the result of extra fluids pumped in intravenously for someone with my condition is that it increases the blood volume because the fluid enters directly into the bloodstream, which means I stay more hydrated and rather than the gut and tissues absorbing the oral intake or it being expelled, it helps to increase blood pressure and reduces tachycardia which feels reeealllllly nice! 

Finally, there are other things Pablo is used for are when I'm not well like receiving some medications and antibiotics etc etc.  Funnily enough, sometimes I, and others with central lines can actually taste the medicine that is injected into my bloodstream, which is both gross and weird. Crazy hey!! 

So as you can see, Pablo plays a very important role in my life and the great thing is he can stay in for many years to come as long as I don't get an infection or he causes me any problems. He is my secret weapon and one of my most important pieces of hidden equipment.  

Now, I decided to write this blog about my hidden friend as part of dysautonomia awareness month as I wanted to inform you that although my wheelchair and other bits and pieces may be obvious and not able to be easily hidden, they are definitely not the only things that keep me going. And I am certainly not alone in this situation.

Most people refer to Dysautonomia as an 'invisible illness' because many people can function and live their daily lives without obvious aids or equipment and appear seemingly 'normal' whilst often disguising their struggles. This invisibility should Not invalidate anyone's struggles. Something that this illness has definitely taught me is  that just because you can't see something, it certainly doesn't mean it's not there. 
They say that 1 in 3 people suffer from some form of chronic illness, which is quite amazing when you think about your circle of friends or family alone. That is a lot of people fighting and suffering in silence and discreteness. Too many people if you ask me. 
People everywhere around you are fighting battles you cannot see. Many people require different medical equipment and help in some form or another, that will be invisible to the naked eye. Dysautonomia is just one of many invisible illnesses.
 So I guess as Dysautonomia month is closing, this is my little reminder to you:

in any instance, just remember things are not always as they appear. Some people are fighting battles that we know nothing about.

Be kind. Be gentle. Be human. 

xoxo