PTSD and Me

It is important to know that my wife was a dialysis patient, and that she was never really healthy in all the years we were together. When we first got together, I used to count the number of days she was not in the hospital. She lived as long as she did because of her resilience, courage, faith, and toughness. Our life together was not about her health issues, but her health was a major factor in our life together.

She dialyzed at home, overnight. She did this in her chair, catching as much sleep as she could. Dialysis is a loud process: the pump of the machine, the pump of the Pureflow dialysis fluid machine, alarms of varying degrees of urgency. I slept in the other room, unconsciously on alert, unconsciously analyzing each alarm as it rang. If it alarmed once or twice, I knew Jenny had it. If it persisted, or if the alarm kept recurring, I sprang up to see what was happening.

You never know what you’re going to see. Many times I would see Jenny at wit’s end cursing  the machine, cursing dialysis, cursing the fact that she was having to do this, all while trying to fix whatever alarm was ringing. We had a big manual with a chapter called “Troubleshooting” and unless we knew right off what was happening, we’d drag it out, open it up to find the alarm, and attempt the remedies. Some alarms, like air in  the bloodline, give you only a couple of tries to fix, and then you’re done: the machine stops, and you lose your blood, meaning you pull the needles and any blood in the lines goes into the trash. That only happened once or twice when we were home, and it is a major loss. You lose your blood, and you have to get set up for another run, which takes about twenty to thirty minutes. Sometimes Jenny would leave her needles in and hook up with the new cartridge. You don’t have a lot of options here, because when you start a run, you pump in a dose of Heparin, which is a blood thinner. It’s dangerous to screw around with that, so best to start again.

Sometimes Jenny would sleep through some pretty alarming alarms, such as a kinked blood line, which causes the pump to stop, which allows the blood in the lines to clot if you leave it too long. I’d do what I can to clear the alarm and make sure she was okay. She did not sleep well, so I was glad to see her sleeping; not so glad to see her sleeping through alarms.

Jenny was on the transplant list. When she was active on the list, she was first up – meaning all available kidneys would be crossed with her if there was a possibility of matching. The last few months she was off the list due to some health issues she needed to address. But we did receive a couple calls for transplant in 2014, only to have them withdrawn because the donor did not match. Due to her antibody count, she was nearly impossible to match. The transplant doctors would tell us there’s a slim chance, but still a chance, but then when their guard was down, one or two voiced to me, at least, that it was impossible.

When Jenny was in the hospital, again, I was on alert. I didn’t sit waiting for a phone call – I didn’t want a phone call. Phone calls from hospitals are bad news. If a phone call did come, it could be the nurse calling saying that Jenny wanted me to remember to bring her slippers, but sometimes, it was worse. One time I got a call from Jenny where she was crying and frightened:

“Oh, Marko – I don’t know what’s happening! I feel like I’m going crazy, I need you.”

“I’ll be right there.”

Turns out, it was an adverse reaction to Phenergan, which was used to keep her from getting nauseated after getting morphine. Oh my God she was pissed off that they didn’t tell her what it was and what it was for.

Looking back, I realize now how hyper alert we both were. And, apparently, I still am.

Yesterday morning, my phone rang at 4:52am. It was an unfamiliar ring, and it was on Skype, which I never use, but which I have turned on anyway. I get lots of requests to be connected by many dubious people, and none from people I know. But, no one has ever just dialed until yesterday early morning. Half-awake, and wondering what the hell was going on and who the hell would be calling me at 4:52am, I looked at the name: “adwoa amankwaah.” I rejected the call. Immediately, it called back. I rejected it again. Another three immediate call backs, and I rejected each call.

What flashed through my head during this process was: who is calling me? Why are they calling so insistently? Why at 4:52am? Then:

Oh my God, Jenny – Oh my God Transplant. And I knew neither one was possible, and yet I still felt it.

I thought it may be work-related, but then seeing the name I knew it wasn’t.

That feeling of dread, of urgency, and of fear lingered, and I felt that surely someone somewhere must be dying or hurt, someone I need to help, but can’t. Even though I knew it wasn’t true. It slammed me right back into it. I wasn’t glad to realize it wasn’t true, you know, like when you wake up from a nightmare and realize, “Hey! Martians really aren’t invading!” No, I wasn’t glad. I was sad, because it reminded me of the last time it was true.

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