Cystic Fibrosis & Organ Donation Awareness – Page 11

JANUARY 24–9Lives, 9Months

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.

–Maryanne

JANUARY 15–Down By the River Allegheny

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…”

—Maryanne

DECEMBER 19–Christmas in Pittsburgh

Here we are in Pittsburgh! All is well. We’ve settled in to our apartment. Christmas Eve will mark 8 months of waiting on the transplant list. And now marks a year since Caitlin has been in need of one. Last December, she bought herself a tree, brought it home, and decorated it—-then caught the virus that “broke the camel’s back.” The tree was beautiful! Here it is:

We arrived in Pittsburgh on Monday. The city is festive and our apartment is comfortable. Caitlin and Andrew decorated the tree. For the first time, we have colored lights, but this is a different kind of Christmas, Caitlin says, and it’s all about doing new things.

I can tell you that there is great relief in knowing that we are close to the hospital, and I no longer need to keep the emergency list of medical transport services with me at all times.

Happy holidays to everyone! I’ll post some photos of Pittsburgh in the coming days. It’s an interesting place.

—Maryanne

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 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

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

APRIL 24: Update

It is Caitlin here. I wasn’t planning on writing on this blog but why not? “I’m not a blog person,” I said. Well…who is? Who cares? Why spend any time proclaiming what you are or are not, and what you don’t like? There is value in that kind of thing, I know, for humor…but right now all I can think about is everyone I love and everything I want to do. I am so grateful for all my friends and family, for Andrew, and for my parents who continue to do anything they can for me.

So..I got listed today! I got my “score” which is 44. 44.2196 actually. It is a higher score than anyone expected — everyone thought I’d be somewhere in the 30’s. 70’s is about the highest usually. It is based on how sick you are, and you technically want it to be higher so you can get transplant sooner. It still doesn’t mean much though, and I could get called at anytime, or I could wait; there is really no way to know. When there are lungs available, the calls are initially made based only on height/size and blood type. If those match up then the score comes into play, and the sickest person gets the call, and so on and so forth. That is a very simplified way of describing it. For lungs it is not a matter of having a set number in line and just waiting. Your score can change too, if you get sicker, to increase your odds of getting a transplant sooner. (All of this came in to play around 2005 when the regular wait list method wasn’t working for lungs anymore.) After getting the call, I could go to Pitt and it could still be a false alarm. This happens a lot. Once they get to see the lungs in person they may decide that they aren’t a good enough fit, and I come home to wait again.

I read something today somewhere, something that described transplant and waiting. I don’t even know where I read it, 1 out of the 100 things I can get carried away clicking and reading. It said, “The ride of the wait is like a Six Flags Roller Coaster. Attitude will get you through most of the tough times. Believe in yourself and your inner strength to survive and NEVER give up.”

Believe me, these words aren’t complex, I know, but they jumped out of the page, a simple emphasis at the end of paragraphs of dry informative material. No amount of rational thinking in the world can do for you what this basic instruction can, whoever wrote this knew that, and got right down to the heart of the matter. There is no escaping that this is a risk, and we are all taking the leap – the surgeons, my family, me. And all of it manifests because someone else has to die. There is something inescapably raw about it. And at the core of it, once you have educated yourself, tried your best, and hoped the science will all work out, all you can really count on is…never giving up.

–Caitlin