JOURNEY: the unknown

Dialysis. As I discussed in the post JOURNEY: waste removal, January was an introduction to ENRD (End Stage Renal Disease) that landed my dad in the new world of kidney dialysis. I am a learner. I love to read about and study new things. If it has to do with medical anything, I am in. Combine that with the fact that this particular JOURNEY is happening to my Daddy and I have planted myself smack in the middle of all things dialysis.

Just a few of my new informational tidbits for like minded souls:

From the United States Renal Data System’s 2017 report:

  • In 1972, Medicare eligibility was extended both to disabled persons aged 18 to 64 and to persons with irreversible kidney failure who required dialysis or transplantation.
  • ESRD requiring dialysis is one of only 2 medical conditions that give you access to the Medicare program between the ages of 18 and 64.
  • Even though the ESRD population remains at less than 1% of the total Medicare population, it has accounted for about 7% of Medicare fee-for-service spending in recent years. That equates to 33.9 billion in 2015.

I am a novice in my dialysis knowledge. I am learning more each day. But with the resources of my dad’s care team, I have learned so much in the past 6 weeks about a disease that was foreign to me just months ago. The most fascinating (and honestly, depressing) part has been the actual process of dialysis. This offering is my way of processing. Writing is my therapy. My blog is my way of interacting and communicating and placing letters into words and words into sentences and sentences into thoughts. Some of this is raw. That’s how my brain and heart feel after the last 6 weeks. Tired, vulnerable, exposed, longing for clarity, holding on to promises. Loved.

When your kidneys fail, you need the help of dialysis to filter the waste. To make that happen, there are two types of dialysis. The most commonly identified is hemodialysis. “Hemo” is when a semi permanent IV line, or a more permanent graft or fistula, is placed that gives immediate access to begin blood filtration. This is how my dad started dialysis. Because it was emergent in nature, he had a port placed and began hemo that same day. For the next three weeks, he had hemo treatments in the hospital and at an outpatient dialysis center. 12 hours a week, 3 days, should be doable, right? While it is certainly life sustaining, for many patients including my dad,  hemo is also wickedly hard. The side effects include low blood pressure, extreme fatigue, cramps, nausea and headaches. These symptoms can occur during the treatment and can persist post treatment. During those three weeks, my dad was exhausted all of the time and had to be medicated for side effects. And then there are the emotional tolls.

Traditionally, hemo is performed in dialysis units. For many patients, this is a way of life. While waiting for transplants or dealing with acute renal failure, this is their saving ground. For others, years and decades have been spent on machines treating ESRD. After sitting at dialysis with dad in center, I am appalled at the number of elderly patients that are transported from long term care facilities (by medical transport companies) to privately owned dialysis clinics. If you can’t see where I am headed with this conversation, just google “medicare dialysis fraud”. The mental and emotional toll of this environment is exhausting. It is depressing. And the worst part is that it really doesn’t even make you feel any better. I say all of this with the full knowledge that my dad is almost 75 and his other conditions complicate the situation, but with all I know, hemo is HARD. In addition to in center hemo, some patients perform at home hemo. While you don’t have to be a nurse or have a medical background,  home hemo involves vein access and big needles and blood and most importantly, a trained caregiver. You cannot do home hemo by yourself because of the blood pressure issues and other side effects. This is not an option in many situations, including ours.

The other dialysis option is Peritoneal Dialysis. PD is a type of dialysis that uses the peritoneum (the lining of the abdominal cavity) as the membrane through which fluid and dissolved substances are exchanged with the blood. That is the option that we have chosen for my dad. On January 16th he had a catheter placed in his abdomen for PD. He continued to take hemo treatments while the port healed. After two weeks of healing, we (this is a team effort!) began training to perform his dialysis at home. After a week of daily training treatments at his home dialysis clinic, we were sent home to be independent. Whether they wanted it or not, mom and dad had a new houseguest beginning last Wednesday. For the next 72 hours we navigated the early days of this new way of life.

On PD, the patient is attached by their catheter to a cycler.

IMG_4110

Your dialysis prescription determines the length of time, the amount of fluid and the drain volume. Ideally, patients hook up at bedtime and cycle all night, waking refreshed and with a successful treatment completed. We learned quickly that treatments are not always smooth. Imagine being on an IV in the hospital that alarms every 1.5-2 hours. Not exactly restful sleep. Your position matters. Your drain flow matters. It all matters. Dad is on a “short” 8 hour cycle. As I have read and met people in support groups, some dialyze 15-16 hours a day. This machine is literally life support. Without daily treatments, the toxins in the blood will poison your body. Kidneys are vital. In ways that I did not even know.

So what’s my point in telling you all of this?

Perhaps you like to learn and this is fascinating to you. Yeah! I shared wisdom.

Perhaps you know someone on dialysis and you have no idea what life is REALLY like. Ask them. It can be very isolating.

Perhaps you know someone who is a caregiver of a chronically ill person. Love them.

There is nothing that reminds you that life is not “normal” like 41 boxes of medical supplies sitting in your home. What was once a storage for seasonal door decor is now boxes and boxes of solution. I can assure you that anyone loving someone in the midst of a medical crisis is impacted in ways that you will never know.

But above all else, I write this because WE NEVER KNOW. We never know what someone else’s JOURNEY is like. We don’t know the fear or the pain. We don’t know how much sleep someone has missed or how much worry has kept them from being soul settled. We don’t have a clue how finances have been affected. We don’t know what hard decisions have been made. We don’t know what part of their world has recently died in light of their diagnosis. We don’t even know if when they say that they are OK they really are. More than likely, they are just so damn tired its easier not to get into it. What if this week, your question to the person that comes to mind in reading this could be, “What was the hardest part of the past few days for you?” That question in itself says cut the BS, I want to know how you REALLY are. 

When I got home yesterday, I sat. I looked at my kitchen and kids and laundry and just sat. I have spent the last 24 hours trying to find words to describe what it’s like wear a mask in your own bedroom. I’ve thought about the drain that now runs behind my parent’s bed and disposes of the life sucking toxins that pollute my dad’s body. I have seen how everything – from foods, to schedules, to meds to doctors to driving – has changed in the 6 weeks that are 2018. Medical decisions and treatments are not new to us, but up to this point, everything has been “temporary”. Unlike many on dialysis, dad is not a candidate for transplant. This is our new normal. And I say “our” because when you love someone, you jump right in with both feet into the deep, deep well of heartache and pain and change.

Originally, my plan was to stay with my parents on Wednesday and Thursday nights and return to League City on Friday. Thursday night was not easy, so I washed some clothes and stayed Friday. As we talked about how I didn’t NEED to stay, I was reminded of all of the times that my parents didn’t NEED to take care of me. Times when they could have easily said, “you are an adult.” But we are never too big or too strong or too capable to be loved. And that is what working puzzles and trying to cook and advocating with nurses and changing dressings looked like this week. Next week, it may be something else and I will be here because once you peek into the unknown, you can’t go back.

And come hell or high water, my people will not go into the unknown alone.

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