Our Precarious BALANCE . . .

Once and I while I get a reminder of the real gravity of my health situation.

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I have a vascular access that I use to attach myself to my dialysis machine with.

This access is currently infected.

I have no symptoms, other than itchiness and drainage . . .  but it’s a dangerous situation.

This line is internally in contact with my heart. The prospect of bacteria getting into my bloodstream isn’t a positive prospect. I am at a higher risk of becoming septic because of it.

In the meantime . . .

As soon as I saw something was wrong I contacted my dialysis clinic. Within 15 minutes I was at my clinic (I live 5 minutes away) getting a bacterial culture swab and having a nurse look at the site.

Within 15 minutes of that I was at the pharmacy picking up a prescription for some serious antibiotics.

My hope is that with the help of my nurses and a plan and the antibiotics this “incident” will be resolved with no further consequences.

I have been told to get to emergency immediately if I develop a fever or chills or begin to feel unwell. I’ve heard of people hallucinating from septis. I’ve warned my family of that. I will abide by that advice and get to emergency right away should I need to.

I do not feel unwell. And hope not to. (Today will be my fourth day on antibiotics.)

This situation reminds me of the bigger picture for dialysis patients – and people living with kidney disease.

There was a day when this diagnosis was a death sentence. Thankfully we’ve made strides since then with different modalities of dialysis for a person with renal failure to chose from. And the positive advent of kidney transplants.

I am very thankful to have the option of dialysis. I will start by saying that. Without this option I would have died in my early twenties.

Unfortunately I think there is a misconception about dialysis . . . that dialysis fixes the problem of renal failure. In reality it’s a fix in the same way duct-tape fixes a structural issue. It’s a “has to do for now” solution.

There are so many complications with dialysis:

  • people doing dialysis are at risk for cardiac problems
  • people doing dialysis are at risk for infections
  • people doing dialysis must follow strict diets related to fluids and electrolyte balances (being mindful of foods containing potassium, phosphorous, etc.)
  • people doing dialysis tend to have issues with their bones over time

Dialysis should be – at best – a short-term solution.

Unfortunately in reality dialysis is being used while people wait spans of YEARS to get transplants. Some people with no option of transplant must do dialysis for the natural course of their lives.

No “short-term” to those options at all.

And in the meantime we live on a literal health tight-rope.

Each one precariously balancing our personal load of risks. 

My cardiovascular risk reared it’s head as congestive heart failure and a cardiac arrest.

My infection risk reared it’s head in peritonitis episodes, line infections and now this vascular line infection.

With the personal sacrifice of doing 20 hours or more of home hemodialysis I am allowed a little more flexibility with my diet than the average dialysis patient. On the other hand, most dialysis patients are not on an aggressive dialysis schedule and can’t share my rewards.

My bone issues were resolved with a parathyroid operation. (No small measure.) The toll that dialysis took on my bones will never be 100% reversed though. In the past I’ve broken bones vacuuming!? The side-effect of a parathyroidectomy is “hungry bone syndrome”. My body requires a much higher level of calcium than the average person.

As I review this list I see I am very lucky to be alive.

Any of these risk factors could have ended things for me. And a few almost did . . . most notably the cardiac arrest I had in March of 2011.

One of the reasons that I’m committed to sharing my story is because I want people to know what life with Chronic Kidney Disease is really like.

I am all for celebrating our successes but I will not hide our challenges.

Somehow Kidney Disease is treated like the ugly-step sister to the other diseases. No one really talks about us. We can’t seem to capture the momentum or attention that other diseases have. ???

My aim is to help change that.

As long as there is breath and energy in my body I will fight to bring Chronic Kidney Disease information to bigger and bigger forums.

Part of my plan of advocacy is to learn more about and find out how I can support innovations to the treatment of kidney disease. Looking at the future for our population. There is reason to have hope as there are a lot of amazing innovations in the pipe-line. Maybe there will be future with options superior to our current system? Artificial implantable organs. Wearable dialysis systems. Stem-cell use in conjunction with transplants. Stem-cell use to grow much needed organs.

None of that will happen over-night.

Those of us living with dialysis face risk today.

People assume people living with dialysis are okay. There is no urgency to our medical situations. 

 Most of the time, with effort from doctors and nurses and our care-givers and loved-ones and our own efforts . . . we are well.

But sometimes we’re not.

And those times when we’re not, *tears*, the prospects are very scary.

 

 

 

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