New new lungs

I got a double lung transplant last Saturday. Gifted a new life again.

If I die before I wake…

I’m dying. Slowly or quickly, the reality of that hit me again today. I’ve been in hospital almost two weeks now with heart failure. It’s progressed to a congested liver. Even if (when) I go home, things do not look good for old Kaarina. They’ve arranged for home care to come twice a week, but first I have to make it out of here. It doesn’t look like it’ll be this week. I want to believe I’ll go home and recover💯, but I know I’m just going to have to adjust to a new normal. I’ll be getting a transport wheelchair so as to expand my world. I’m going to go to the beach before it gets too cold and we’re going to have a bbq and enjoy time here on earth. I’m dying, but I’m also living. Maybe more now than ever. Even here in this god forsaken place. I’m tired, but I’ve learned to rest, not quit. Today was a bad day, but also a good one. It’s good sometimes to explore your darkness, sometimes it’s necessary to appreciate the light.

So if I die tonight before I wake, know this: I loved. I was loved. I loved life with a passion and gratitude unchanged by any bad day. I lived. And I hope you will remember me for my laughter, not for my pain.

Goodnight moon.

The old ticker

I’m in hospital again with heart failure. The old ticker’s not looking so good. It can’t pump the water out no matter how hard we diurese me. This sucks. I’m afraid this time I’m really going to die soon, but I’m also determined not to. I’m all kinds of tangled up emotions right now. Hence why I’m not asleep. My sleep sucked all night. I must’ve gotten up to pee seven times. At least. Sigh. Still not enough. I’m so tired. Physically, mentally and emotionally exhausted.


So I’m ten weeks post-surgery now. I’m healing well.

Still some healing left to go, both inside and out. But I’m feeling much better than I did before the operation. I’m walking again, slowly and sometimes painfully around the block. I’m getting back into my meetings. I’m moving on.

So, am I healed? Hell no. I’ve still got severe PH, specifically PAH now due to scleroderma. My heart is still hardening from that bastard scleroderma again. My valves are still leaking. My heart is still slowly failing. If I compare myself now to a baseline of a year ago, I’m doing so much better. If I compare myself to two years ago, I’m doing much worse.

So I try not to compare. I try to live now. Now I can walk around the block or up and down the street or to the hairdresser’s. My world is slowly expanding. I know there will come a day where all this will be gone.

Until then, live now.

Heat exhaustion

It’s times like this that I really feel like I’m dying. The humidity and heat outside are brutal. I just went for a walk and made it only half a block. It feels like I’m underwater. Nothing looks right or sounds right. I feel disconnected, like I could just leave my body crumpled on the sidewalk and float away. My heart is heavy. I can feel it failing. Or that’s what it feels like. It’s just heat exhaustion. It is dangerous. But I got home to the A/C and turned up my oxygen. I’ll be fine. But I’m not going out there in this heat again.

Know the signs of heat exhaustion:

In between

I live in the moments in between. My story includes the mundane and sometimes forgotten. The days of laziness and rest, when nothing much happens except life. It feels like I’m always waiting. Waiting for lunch, waiting for surgery. But I live in that waiting period. Life isn’t always making the most of everything. Sometimes it’s just making it through the day with the will to see tomorrow. So that’s where I am right now. In between breakfast and lunch. In between waking up and sitting out on the porch in the rain. Living.