Kerry's Causes, Memoir and Reflections, TGIF

Rare Disease Day, 2015: Ventilation

We got to the hospital, that spring day, not knowing what to expect…

I had just spoken to my brother a few hours earlier and now here we were, waiting for the doctors to come out and tell us what was going on, if his kidney transplant of over ten years was a total loss.

It would be a crazy and chaotic spring that year, five years ago already. How time passes.

After losing Grandpa,

Ruby Red,

that February and something mysterious going on with my brother and one remaining grandparent hospitalized too.

We felt worn out, running from one to the other, the sterile halls became our temporary home.

***

I had my transplant in 1997 and two years later he had his: me from my father and then it was our mother’s turn. Her kidney never seemed to work like the one my father had given me. It was nobody’s fault, hers, or my brother’s behaviour that did it. It just was what it was.

It lasted him ten years though, which got him through his teen years.

Things started to go downhill eventually. He felt sicker and sicker as time went on. He had low energy and found it hard to walk far at all. His blood levels were low and he started needing transfusions. His hemoglobin dipped all the way down to forty-five or fifty. It should have been well over one hundred.

http://www.mayoclinic.org/symptoms/low-hemoglobin/basics/definition/sym-20050760

It all seemed like a blur. He ended up in hospital eventually and the doctors were scrambling to figure out what was keeping his levels as low as they were. We all knew his transplant was nearing its end, but we hoped, he hoped it could be dragged out as long as possible, before dialysis or another transplant would be his only option once again.

Weeks in hospital, second time in one year. He had test after test and this included a bone marrow biopsy. They had tested to find out, if his blood was so low, that maybe he was bleeding somewhere inside, a slow leak of some kind. This seemed strange, but it had to be more than a failing kidney.

***

We had been visiting him in hospital on a daily basis because that’s what we did in our family.

We were used to being in children’s hospitals. Now we were grown, but our family still needed each other. I needed to be there for him.

On that one particular day we were on our way to visit, but he spoke to me on the phone first and was feeling a lot of extreme pain. Something wasn’t right and things went downhill fast.

Within a few hours, between him and the nurses saying something was going on, we raced to his side, but by then he had been taken into the cath lab.

He would report to me later that the pain he experienced that day was the worst he had ever felt, even after years of surgeries as a child.

We were brought into the ICU to see him. The bleed had been found, a tiny coil had been placed in his pelvis to stop it, the cause of the pain he felt and the reason for all the blood loss he’d had in recent months or even years.

We walked into his private observation room in the ICU and were shocked to see the state he was in. The shock of it hit me like a tun of bricks. I expected to hear his voice and instead I found silence, pierced only by the steady push of the machines, breathing for him, as he lay in a purposeful sedition, brought on by the doctors.

I hadn’t been well prepared and never imagined it was that serious. How serious I couldn’t quite grasp even in that moment.

He was silent, unconscious, still.

All I could see was his dark shape against the light pillows. I heard the sound of the ventilator and it hit me. Tears filled my eyes then, the burning, so well known to me, pressed against my eyelids.

We stayed a while, talking at first in whispers, not knowing why.

Then, needing to let him rest, we went for dinner, like we often did.

I felt numbed by the urgency and the unexpected situation we were dealing with. The bleed was stopped, but he was looking at a week in ICU and who knew what else. I faced the fear of losing him.

Would that, could that be a possibility, even remotely?

I had never before felt so scared of that possibility. What would I do if that happened? HE was so much a part of who I was, my little brother, my best ally and the one who knew me best in the world.

I picked mindlessly and miserably at my dinner, but all I wanted to do was return to his bedside, to watch over him and stop any further harm from coming to him.

***

He had a scratchy voice lasting for days, from the breathing tube that day. HE had the nurses pipe some music through the speakers of the ICU for a distraction and something to focus on and help to pass the hours he lay there in that bed.

We stood at his bed, my sister and her husband and myself. HE had been awake, in horrible pain, and then out of it for he had no idea how long. A shock for him when he finally woke up again, when we told him what happened and how much time had passed.

HE would be back on dialysis within a week. The doctors wanted to do more tests that had high risk of the dye used damaging the kidney to the point that, if it weren’t already done for, it would surely be then.

He was confused and on the fence. It was a week of disorientation and at the end of it he was on the way to being on the organ donation list, for the first time.

***

Kidney disease is common enough, but he had gone through something none of us had expected or understood. He must have been bleeding internally somewhere, and then he wasn’t. It had ended, not as quickly as it had begun, but was a slow build and a quick improvement.

He would be on dialysis, three times a week, for the next three years, before the day he would get the call that a kidney was available.

I wrote about Rare Disease Day for the first time last year, only weeks after the first post I wrote for this blog.

My brother is strong and resilient. I know it is hard to deal with medical issues that leave confusion and uncertainty in their wake. HE still deals with this, but it has returned from a serious kind to a slow lingering of symptoms that only he really knows.

HE deals with things every single day, but they are not internal bleeding that turns dangerous. He does well now. HE feels great, for the most part, and doesn’t let things out of his control stop him from living his life.

I admire him for this. He doesn’t dwell on the what if’s like his big sister. I wish I had his view of the world sometimes.

I stopped myself, just short of including “Wind Beneath My Wings” in this post. No need to embarrass him anymore than I already do.

🙂

I will include a link that explains what he is doing with his life now though, the hopes and dreams he has for his future,

HERE.

***

Rare Disease Day, 2015 – Official Video – On YouTube

Tomorrow is Rare Disease Day, 2015 and I will never forget that I could have lost him, five years ago, in a second.

Having a rare disease,

like I wrote about last year,

can be incredibly frustrating, when others do not understand, including the experts who have all the medical knowledge.

I just wanted to celebrate, on this day and every other, that whatever might be our lot in life, I still have my brother in mine.

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5 thoughts on “Rare Disease Day, 2015: Ventilation

  1. What a frightening experience Kerry. I could feel your fear through your words. I didn’t know there was a Rare Disease Day and I thank you for publishing this post. – every little bit of awareness helps.

    Brian’s essay was great. Love the story of how he became his own advocate to further his education.

  2. Pingback: My Top Spills and Thrills of 2015 | Her Headache

  3. Pingback: Rare Disease Day, 2016: Even Rarer Than a Leap Year, #RareDiseaseDay | Her Headache

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