We haven’t posted since July because there’s been little to say until now. Nothing’s changed for Caitlin but UPMC is having a bit of a crisis—mold in the cardio-thoracic ICU and elsewhere in the hospital that may have contributed to the tragic deaths of some transplant patients.
Until they get the problem under control, UPMC is suspending transplantation. We are going to take this totally unexpected opportunity to go home and breathe a little New England air for a few days. Hopefully, UPMC will be up and running soon, at which point we will come back here to resume our wait.
Caitlin and I have not been home since we drove here on December 15, and she’s feeling well enough to make the trip, so we are thankful to be able to turn a bad situation into something positive. I can’t tell you how much we look forward to seeing that welcoming back door flung wide open by Nick, the reluctant bachelor…. And we can’t WAIT to see how Henry reacts, since he hasn’t been home in almost 7 dog years~~!
View to the old building from the balcony of the new.
Hard to believe, but we moved here on December 15th. On Monday, June 15, we will have been here 6 months. That day, we start a one-year lease on a new place, just around the corner, with a much better layout for Caitlin. It’s modern but very comfortable, and it will be a lot easier for Caitlin to get around. We do hope we’ll end up “wasting the lease,” and getting out of here long before the lease expires, but at least we’re prepared.
–Maryanne
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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.
I created this blog exactly one year ago this afternoon, which I realized when WordPress sent me a renewal bill. We were in Pittsburgh to complete the transplant evaluation. Caitlin had been sick all winter. Everything had changed, and we were preparing ourselves for even more change. I never would have really thought that a year later, we would still be waiting. But that is the reality of organ transplantation.
We like to keep the blog upbeat, so I don’t go into any real detail about what Caitlin goes through. In my last post, I referred to a difficult two-week stretch as some “not-great days.” Caitlin intensely dislikes drama of any kind, and does not like to call attention to her problems. But as we mark a year of this surreal time that is waiting for organ transplant, I’d like to toast my noble little bird.
She has been remarkably stoic her entire life. And I’ve been full of admiration, this past year, to see just how well she has coped with the kinds of issues we hope never to watch our children deal with.
I saw this quote by Maya Angelou the other day; it resonated with me:
Having courage does not mean that we are unafraid.
Today marks 9 months on the transplant list, and almost 6 weeks here. The time goes by so quickly! These days are as much a part of our lives as any other part of life and so we do try not to live as if we are in limbo.
Transplant patients are urged to be as fit as possible, to help with recovery, post-surgery. It’s remarkable (and a good reminder for all of us) to realize how much benefit can come from a minimum of of effort. We have a workout room in our apartment building and Caitlin has been going there every other day to do a little self-monitored cardio and weight-lifting. She’s seen some nice gains.
Today marks one month since we arrived in Pittsburgh! It feels like we’ve been here a long time, but the days go by very quickly, too. Christmas was festive and pretty in the city, and we were so grateful to receive fun packages and cards and notes from our friends and family, and a wonderful New Year’s visit from my sister and her family.
Caitlin saw her pulmonologist yesterday. As far as her wait goes….her score is pretty high for her blood type and chest size, or so it seemed when he looked at the list. Of course, that still doesn’t mean that a donor will come any time soon, or that another person her size and blood type won’t get on the list and be ahead of her. It fluctuates day to day. But it’s pretty positive.
A friend’s nephew out in CA was transplanted in December (after waiting 2 years!) and is doing really well.
I also had the pleasure, the other day, of meeting with a friend I made when I was here last year. Her husband was transplanted last January and he just celebrated his first year! They are a lovely young couple who have been through so much, and I hope that 2015 treats them very well.
It’s been frigid here, so I haven’t been out taking photos the way I’d hoped to. Still, I strung together some silly iPhone moments from the past month and made the montage, above.
Having Henry around is great. He makes us laugh every single day. He will be 11 in two weeks and we still MARVEL at how puppin’ CUTE he is. His presence inspires us to compose wonderful songs.
“You, me, and Henry, and Andy, and Nicky…. Down by the River Allegheny… Allegheny…”
A view to Pittsburgh from a cliff area called “Mount Washington.” Our new apartment building is in amongst those tall buildings down there. It’s a cool place–a 1960s building on the historic register. Has a real “Mad Men” look to it.
The question we are hearing lately is, “Any news?” The answer is “No.” There’s no updating or anything that happens. You basically just wait for the phone call.
August 24 marked four months on the transplant list. We are grateful that we were able to spend the summer here in Boston! We always tell ourselves that our situation could be a lot worse.
This month, we have to travel to Pittsburgh for Caitlin’s six-month checkup. Since she cannot fly commercially anymore, we have to make a road trip out of it. While we are there, we will look for a place to live, as we will have to relocate there once the bad weather comes.
Since we had to stay within that four-hour window to get to Pittsburgh, we were unable to go to any of our usual summer spots (We hope to see you next year Maine, Vineyard, Ireland). We did spend a weekend “on the water,” at an inn at the yacht haven on Boston Harbor. The weather was spectacular and our room had a spacious, comfortable deck. Look at the name of the boat that was tied up just outside!
..because we aren’t experiencing time in the normal way. It was just Christmas, wasn’t it? The real beginning of all this. Yet now it’s mid-June. Summer solstice time. We should be planning trips to the Cape, the Vineyard, Maine.
The other day, Caitlin, driving, said, “I keep thinking it’s April.” The sky was dark with approaching rain. The air was unseasonably chilly. April seemed plausible.
We are not complaining. This is just an update. We are grateful that we can wait here, in a city like Boston. Andrew is here at the moment, down from Maine, and he and Caitlin share a great camaraderie. Nick and I are doing a lot of things we’ve always meant to do in Boston, like biking all the way down the Esplanade, and wandering the North End early on Sunday mornings.
9 Lives Notes 