Tag Archives: lung transplant

JUNE 29 – A Few Clarifications

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* 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

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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

 

 

APRIL 24: Update

photo taken at Rodin Museum, June 2012

photo taken at Rodin Museum, June 2012

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

APRIL 8: And the Weather Is Nice

hen bath

A lot of people have been kind enough to ask how Caitlin is doing, and how the process is going, but like most things in life, everything takes longer than you expect. That long transplant “health maintenance” checklist I mentioned? Ticking it off leaves a lot of room for hold-ups and delays, glitches and bumps. It’s similar to putting on an addition and having the plumber hold up the plasterer, the floor guy, the painter, and everybody else. The details are not worth mentioning, but we are hoping for the listing to happen soon, and have faith that everything will happen when it’s meant to happen. Meanwhile, Caitlin’s been trying to reconnect with her friends in the city. She’s able to do a bit more as she gets used to using oxygen 24/7—she and Andrew have actually been able to go out to dinner a few times, and that has made her very happy. Also, she found a beautiful Elizabeth & James bag that seems as if it was custom-made to fit her tank and a few necessities, and carrying that makes her feel a little better about it.  Sometimes a little vanity is good for the spirits.

She stopped IV medicines last week, so regardless of the transplant stuff, she’s just trying to stay stable.

It was 67 degrees here in Boston today so that made the whole city happy, including us. Also, she’s looking forward to the new Mad Men season because she now lives for passive entertainment. She’s currently reading Primo Levi, and we are both looking forward to seeing the new Wes Anderson movie.

Oh, and big highlight of last week: giving Henry a bath.

–Maryanne

March 12: Home to Wait

So Caitlin is accepted as a Tx candidate, and there is relief in that. She doesn’t have a “number” yet; there are still a couple of minor tests to do which affect the number, and in any case, the number is really “just a number.” If lungs become available that are just right for you, and the circumstances are right, you get them. It’s all fate, chance, luck, divine intervention—whatever you want to call it.

The good news is she’s stable enough, at the moment, to wait at home in Boston, so she and I and Andrew, who’s been unbelievably caring and supportive, are heading out today. She will be discharged on IV meds and oxygen, and I rented a large, comfortable SUV for us. Commercial flying still feels a bit too risky (virus season/stress). This is so welcome, because when we left Boston on the medical jet last week, we had no idea what was ahead, and did worry that we would have to stay on in Pittsburgh indefinitely. We may end up waiting back here at some point, but for now, we are taking it one day at a time.

She actually feels okay and looks like normal Caitlin ! fyi

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