Home.

You hear the word home and you conjure up some sort of image, but not just an image, there is a feeling that accompanies that image. It is rooted deep down: for most, this is a good feeling. Warmth, laughter, memories, foods, traditions, fights, make-ups and the lot of it! You speak to people in the later years, and they will say, when it is their time to die, they would prefer to die at home.

If you have ever spent any quality time in a hospital or emergency department, you will definitely understand. When you have a chronic disease, like CKD, you spend a lot of time at hospitals and clinics, outpatient departments, labs and diagnostic imaging locations. The hospitals become your second home. No, you don’t have your favorite pillow, and you can’t just wander out to the kitchen when you want to grab a bite of something you’re craving; BUT, when you are really sick, that is the place to be. You know you will be cared for and looked after. You get to know the nurses, other regulars, that you see often and there is a certain comfort and peace when there, even relief!

I tend to be quite adamant about NOT going to the ER or to a hospital. When you are chronically sick, it is just a degree of that sickness that is the variant. Are you really that sick that you need to go to ER to be “processed”, banded, slotted into a cubby with a curtain and be exposed to numerous tests, various Drs, nurses, etc. doing their best to make sure they didn’t miss anything and you are getting “the best care”. Most of the time, I think not. My family on the other hand, have other thoughts. I’m not sure if they just feel helpless in being able to help with whatever “event” is happening, or maybe they just need a break from it all and could do with a night or two of no worries. I get that. Being the spouse or child or any family member takes its toll.  Caregiver burden is a term that is used and not attended to as well as it should, but that is another topic!  I must admit, sometimes, they were right and I reluctantly agreed to go.

Getting into that system is sometimes futile. On one occasion, I balked at hospital policy, even though I knew exactly what was happening, why the nurses were doing what they were doing, but I still thought; “would someone just think and use some common sense here??”. I had already been in hospital for several days, they had run every test possible I think, and some took a while to come back. On day 4 or 5, they received word that one of my tests had come back positive for a particular bacteria which is contagious…Up until that moment I had been in a double room, had received empirical antibiotic therapy (meaning they treat without knowing what you have with the hopes of covering most of the suspect bugs), I was totally asymptomatic, but I was told that I was being moved into isolation. I did share with the nurse that the Dr had just been in and said I was to be discharged, and that she should just delay that policy move for another hour or so, because I would be gone and then housekeeping would only have to clean one room instead of two. But alas, that was not to be, hospital policy wins the day! Into isolation I go, just to sit down long enough to get my discharged plan, take my IV out and leave. Waste.

However, another time, I was actually living out a dream, a “bucket list” item shall we say when I became  very ill and actually said to my husband: “You need to get me home”!. We were in Costa Rica, having a fantastic holiday, when I started to have fever, severe abdominal pain, and diarrhea. Just earlier that day I had been hiking up the volcano, but come evening, it was a different story! I knew it was serious because my “usual” remedies were not touching this thing, even the antibiotics! When I get a fever, I know its bad being immunosuppressed. My poor husband was under a tremendous amount of stress. We were in a 3rd world country, with a “health care system” that closed the doors at 8pm, regardless of what your needs. I was thankful that at least I was able to get a couple of liters of IV fluids into me over 2 days, I think that was the only thing that saved me. As I layed in our hotel room rolling in pain, forcibly sipping fluids at my dear husbands constant plea, I truly thought I was going to die. I thought to myself, well, at least I made it to Costa Rica, and if this is going to be it, at least I am warm and have a great view of the volcano. It seemed like an eternity, but my husband finally found someone that spoke and understood enough English to help him arrange for us to get transport to the nearest airport and fly home. He is my hero and I will always be very grateful of the stress and strain he took during those two days! I look back on that journey back home and wonder how I made it, especially flying economy!

We were not home long, when I said, you need to take me to the hospital. I was so sick I knew that was the best place to be. I was never so relieved and happy to be in hospital as I was that time. When they ran all their tests and poked and prodded enough, I found out I was pretty sick: hemoglobin was way down again, my magnesium was too low, was dehydrated to the point where my kidney had gone into acute failure again! I wasn’t surprised: my legs and feet were quite swollen again and made moving/walking quite difficult and painful, just like when I was first diagnosed. The feeling when the nurses started to buzz around starting IVs, putting in a catheter, hooking me up to all the wonderful machines that go beep and sound alarms, was totally welcomed and  it felt good to be home.

Even though the hospital is not truly home, that same feeling of security, warmth, peace, and being cared for were the same. Home is more that that place we rest our heads, it is a place to retreat to, feel safe, feel warm, feel loved, understood and be surrounded by those we treasure. Home is where we face storms, suss out trials, tribulations, seek the comforting words or touch of a loved one. There are many expressions, songs and quotes about home, some even ponder the concept of home as being a person and not a place at all. I can understand that, I get that. For no matter which home I am in, the sense of the caring and understanding goes a long way to making me feel at home.

Home is where the heart can laugh without shyness.  Home is where the heart’s tears can dry at their own pace. 
Vernon Baker

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