kittenupdates

NOVEMBER 19–Saturday Afternoon

Last weekend, something happened that made me starkly aware of just how much someone has to lose in order for us to gain.

Our house is on a busy road, on a bad corner. Long ago we erected a large fence along the front. We sound-proofed our walls. We turned the focus of the house toward what was tranquil and pleasant: the yard and gardens, the river and trees.

Late on Saturday afternoon, Andrew was with Caitlin in Boston and I was home. I was on the phone with a friend, talking about our imminent move to Pittsburgh, and telling her how I had heard that someone at UPMC had gotten “the call” that day. As I talked, I wandered into the front of the house. Over the top of the fence that separates us from the busy road, I could see a fire truck. I dismissed it as a false alarm—-they often happen, and in fact, a neighbor’s chimney had been pouring smoke a few hours before.

The next morning, we heard the news. A man had taken our corner too fast. He hit a tree head-on, and died on impact. Our road had been closed for 4 hours, but because of all that insulation we put in years ago, we spent a quiet evening just a few feet away, blithely unaware.

For every lung transplant to happen, someone has to lose his or her life. That is the stark reality of the situation and there is no avoiding it. As I have mentioned previously, Nick’s beloved brother Willie died unexpectedly, years ago. The only positive thing that came out of that tragedy was that seven people got another chance at life. Caitlin has a friend who is seven years post-transplant. Every year, she sets a new goal for herself, to honor her donor. Saturday’s accident was a reminder that we have to try to get through this time with as much gratitude and integrity as possible.

As Caitlin says, “There is no reconciling the trade, of life for life, and no justifying it.”

–Maryanne

Pittsburgh, PA

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.

OCTOBER 7–September Trip to Pittsburgh

The three of us drove to Pittsburgh in September for Caitlin’s six-month check-in and also to look for a place to live. We planned to stay there two full days: one day to find an apartment, the second day for the hospital appointments. I had narrowed all the potential apartment prospects down to two properties and I really hoped that one of them would suit us and have upcoming availability. A few days before we left, Nick and I were at a social event. A lovely woman we’ve come to know took me aside. “I hear you’re going to Pittsburgh.” Her uncle, she said, owned rental properties there, and her son worked for the uncle. He’d be happy to help us in our search. The son was a tremendous help, and the really cool thing? One of the uncle’s properties, and the one the son lived in, was one of the two I’d hoped would be perfect. And it was. An apartment is coming available there and we will be taking it. Probably moving down in December, once the chance of bad weather here could keep us from getting to Pittsburgh in the required 4 hours.

The appointments went as well as they could. Caitlin really valued being there face-to-face, and used the time to discuss a lot of things that are difficult to discuss in detail via email and telephone messages. Unfortunately, as I’ve said before, the shortage of available organs means that people have to be sicker than they should be before transplantation. It is a double-edged sword. The national lung allocation scoring system, while better than it used to be, does not benefit CF or COPD patients as well as those with other lung ailments, since CF people can be very sick, lung-wise, but relatively ‘healthy’ in other respects. Caitlin still likely has a good wait ahead of her.

The great news was that she felt well enough to attend the wedding of one of her closest friends, Kenley, which took place in Providence on September 20th. Caitlin was the maid of honor. She didn’t walk down the aisle or participate in any of the maid-ly activities, but she did give a gorgeous speech that choked us all up. She took off her oxygen, momentarily, for the above photo, but that photo is a good example of how cystic fibrosis is such an “inside” disease. How can someone look so normal and be so sick? It took her a good week to recover from the wedding, but it was the best day of the year for her. Nick and I were thrilled to see her so happy, catching up with old school friends, the wonderful Andrew by her side.

–Maryanne

SEPTEMBER 4–Any News?

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!

–Maryanne

JULY 31–Instant Karma

“If you don’t have your health, you haven’t got anything.”

I never liked that saying (even if it makes for a funny moment in The Princess Bride). And it’s not true!

It’s obvious I don’t quite have a firm grasp on my health right now. But today I thought of (and not for the first time) the famous Lou Gehrig line—“Today, I feel like the luckiest man on the face of the earth.” Retiring MLB due to an illness that would eventually kill him, Lou went on to say, “I may have had a tough break, but I have an awful lot to live for.” Heartbreaking yet true.

So many wonderful people wished me well today, and I know they are the types who do that with all of the loved ones in their lives. When I think of all that goodness circling around, I feel so happy to be a part of it. You have to hold onto stuff like that, because sometimes the world is…confusing, and cynical.

“If you don’t have your health, you haven’t got anything.” I don’t think so. How about: “All you need is love,” and leave it at that. My sappy heart likes it much better, and I’ll take the Beatles any day, anyway.

♫ “Love is the answer, and you know that for sure.” ♫ ♪ ♫

Thank you to everyone who made my day brighter today; you make my whole life bright.

See Lou here, 75 years ago:

–Caitlin

JUNE 30–A Visit From Katie

JUNE 29 – A Few Clarifications

* The other day, I posted a #ThrowbackThursday photo of Nick and me on St. John. A few people didn’t notice the Hashtag-Throwback part. Nick and I are most definitely not on St. John.

* We can’t venture from our home base in Boston. When Caitlin gets called, we have four hours to get to Pittsburgh. This will involve contacting the list of medical jet services that we have pre-arranged. Since no single service can sit around and guarantee that a jet will be available when we call, we have to hope that one of the services on our list will be able to get to us within the allotted time.

* Once we are in Pittsburgh, if all goes well, we will be there for two to three months. (You can’t go home until you are definitely stable. And then, for the first year, she will go back to Pittsburgh for evaluations every two months.)

* You know how once you get used to something, it starts to feel normal? Well, that’s us. We are not as somber, sad, or serious as people imagine. On the contrary, almost every day has a ridiculous amount of humor in it. One of our latest pastimes is taking videos of the way Henry reacts to the word LUNCH.

* When people who haven’t seen Caitlin lately do see her, they inevitably remark on how great she looks. Now that she’s not acutely ill, she does look a lot like normal Caitlin. That’s the irony of CF, though. Unlike some diseases, the effects are mostly invisible. For more information on CF, check out http://www.cff.org.

* Caitlin has done a few needle felting sculpture projects–quite out of the blue–and she is rather good at creating the most charming little creatures! (Needle felting is the process of sculpting/interlocking wool fibers by stabbing the wool with a barbed needle.)

* Happy July, everybody. Summer! Boston is not a bad place to spend the summer, and it’s not as stifling as St. John in July.

–Maryanne

June 13, But It Feels Like April….

..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.

–Maryanne

May 27 – The Start of Summer, & Waiting

We’ve been getting a lot of questions that make us realize that the average person doesn’t realize just how scarce organs are. But scarcity is why people wait so long, and generally have to be far sicker than they need to be before surgery. Last year, donations of all organs were, unfortunately, down in the United States.

I’ve been an organ donor since the day I received my first driver’s license at age 16. Donation has always made complete sense to me, and now that we are on the needing end, I can’t imagine the trauma of knowing that there would be no hope if transplantation was not an option, if organ donation did not exist.

Many years ago, we lost Nick’s brother Willie to a brain aneurysm. A young man that stood tall and seemingly healthy was with us one morning, gone by evening. Willie had a one-year old daughter. His wife was pregnant with their son. The only positive thing that came out of that awful tragedy was that seven people were saved and helped via the gift of life from Willie.

From the Mayo Clinic, here is some comforting talk about the myths of organ donation: http://www.mayoclinic.org/healthy-living/consumer-health/in-depth/organ-donation/art-20047529

You have to make a bit of an effort to be a donor, but only a bit. Here’s how:

❤ First, sign up with your state’s donor registry: http://www.organdonor.gov/becomingdonor/stateregistries.html

❤ Designate your decision on your driver’s license.

❤ Tell your family about your decision. It’s important that they know your wishes.

❤ Tell your physician and friends.

❤ Include donation in your will, etc.

The first step is vital, and you can do it right now.

–Maryanne

MAY 11– Mother’s Day Answers

Hi everyone. Here are some answers to questions we’ve been getting:

Caitlin’s “number” is not a number on a list, in a line where you wait your turn. It’s a score, and the higher the score, the more sick and in need you are. Generally, everyone on the transplant list is somewhere between 30 and 70, though technically the score range is 1-100 . Everyone in Pittsburgh seemed to think she would be in the 30s, and the fact that her score, set by the national organ bank, is 44 is good, since a higher score means you are a higher priority.

Two other major factors determine who gets called: blood type and size. For example, there may be someone on the list who is the same blood type and size as Caitlin, but he or she could have a score of 60, and s/he would get called first. There could be someone very sick with a score of 80, but with a rare blood type, who could end up waiting longer than someone who is a 40 with a more common blood type.

One of Caitlin’s biggest obstacles to getting lungs is her small size. However, you just never know. She has a common blood type and has virtually no antibodies (which can make matching difficult), so those are good things. There is definitively no way of knowing how long the wait will be.

It’s an unsettling feeling, though, to know that we have to be ready to GO–at any time. The call could come in the next five minutes, or it might not come for months and months. We’ve got little bags packed, and plans in place, but when she does get the call, we have to be ready to immediately contact the list of medical transport services to see who can get us to Pittsburgh within the required four hour time frame. We are fortunate to be heading into the summer months, when snowstorms aren’t an issue.

And we are fortunate–and very grateful– that this is even an option. Every Mother’s Day has been poignant for me, since her diagnosis at age two, and this one, especially so. I am very grateful to be this wonderful young woman’s mother.

–Maryanne