Monthly Archives: May 2015

Mostly Companion, written by Caitlin

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Mummy, Kitten and Chickie, Jamaica 1988

At some point when I was little, my mom and I started referring to one another as our “mostly companion.”  It probably grew out of the time I was having surgery when I was 11, and was in the hospital a lot.  We would get overly tired, stressed, and…really silly.  We were absurdly often at our funniest when things were worst.  I guess that is common for people in trying health situations, and it’s a nice silver lining.  The other day, in the hospital while I tried to eat lunch, my mom put on quite a show of impressions and we were laughing so hard. The game was to do one small word, look or movement from a movie…not a whole line.  Her imitation of Salieri yelling “MOZART!!!” from Amadeus was the best…she has an incredible man-voice that she harnesses from deep within. Oh my goodness, maybe you had to be there.

I don’t write much on the blog, but today is the day to do it.  For those of you who know us well, I am so close to my mom that it sometimes terrifies me.  Maybe it terrifies her too. I know how lucky I am to have a mom like her, and parents like mine, and our situation — my situation — has made our link stronger, and sometimes that’s scary.  We both know that there will be a time, hopefully, strangely, where I am well again and we live apart like typical adult mother and daughter, and we will look back on this time with nostalgia. Right now we are  suspended, and we do puzzles together and watch Mad Men and she gives me leg massages, and everything, good or bad, is heightened. Everything makes me cry these days, good things more often than bad — so there’s a lot of appreciating that goes on.  But its also draining, exhausting.  Living in the moment is a good adage, but like anything, there can be too much of it.

My mom is doing everything for me, she has uprooted herself.  My dad is living alone in MA when he is not here, and I know its hard for him in a way I can’t imagine. Andrew is back and forth as well.  Here since December though, non-stop, has been my mom.  She cooks, does the laundry, listens to me, sits with me in the ER, in the hospital…she even feeds Henry homemade food that she makes herself. Here in Pittsburgh, where she knew no one, she has made friends and found interesting things to do, always finding something to be enthusiastic about.  Even writing this now is making me want to be more like her, and I feel even more thankful just putting it into words.

She has somehow found time to write everyday, and has since July 1st, circling the date in red when she is done — she has remarkable follow-through with things.  It has taken me over 2 months to gain 4 pounds, and I WOULD NOT have been able to do it without her.  When you get evaluated for transplant, part of the evaluation is making sure you have a good support system, because it is so vital to how well you do.  This might seem hard to grasp to a healthy person who thinks that ultimately, you can get through anything on your own if you really have to.  I am telling you – haha – you can’t.  You need people, and I wouldn’t be here without her.

I am also aware on a day like today how hard it must be for some people, who have to be painfully reminded each May that they don’t, for whatever reason, have that relationship.  It reminds me again that everybody has some kind of pain, as well as some kind of good in their life, and that none of this is a contest.  As hard as it is being sick and being here, my mostly companion and I are having some laughs.  There’s probably a lot of people out there with great lungs, and no mummy.  Everybody is just trying.

As it usually is when you love someone so much you can’t put it into words, everything I have written here feels inadequate.  But most of you already know what a great mummy she is, I am just here to tell you …that she is even better than that, and that I love her so so so much.

happy mother’s day!

MAY 5 — Update

Well, the purpose of this blog is to keep friends and family updated about Caitlin’s health/transplant. We were lucky she’s been so stable for so many months, but she has had a rough week+, and since I know a lot of you would like to keep her in your thoughts during her trying times, I thought I’d let you know what’s what.

Her heart has some issues, like supraventricular tachycardia (rapid heartbeat) and now, pulmonary hypertension that has worsened as the lungs worsened. Episodes have been managed with the right dose of beta-blocker, but about ten days ago, she started having issues. Long story short–a trip to the ER on a Saturday night ended up in a 4-night stay as everyone worked to adjust her dose and get it under control.

She came home last Wednesday and seemed well. But by Thursday she was looking anemic, listless; it was hard to cough and clear her lungs. She was in overall pain. Her sister-friend Katie visited for 2 nights, and was so wonderful and loving and helpful. By Sunday our Kitten was a bit better, although starting to feel new pain in her lung.

We were getting ready to watch MadMen when an evacuation alarm went off in the building here. She had to climb down 10 flights of stairs. (There was no emergency.) It took everything she had, and took away the gains. There was a marathon in Pittsburgh on Sunday, and I would bet that no one post-marathon felt worse than Caitlin did post those 10 flights. She said she felt like her legs had gone through a meat grinder. The pain in the lung worsened and kept her awake all night.

Yesterday at noon, we returned to the ER for fluids, x-ray, CT scan. Last night she was re-admitted to start a course of IV meds, and re-evaluate the heart, which hadn’t completely settled down on its new dose of beta-blocker.

This morning, she reported that the lung pain had eased a bit. They are putting a PICC line in (a long-lasting IV line) at the moment.  We’ll see how today goes. The plan will be to do the course of IV meds at home. We are old pros at that.

Thanks for thoughts, prayers, good energy, all of it. She needs deep sleep, a calm heart, weight gain, and a perfect-match lung transplant!

–Maryanne

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