kittenupdates

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

APRIL 8: And the Weather Is Nice

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 18: Boston. We are waiting to start waiting

We are grateful to be back in Kitten’s Boston apartment after our long drive from PA. It turns out that there are still a bunch of small tests and procedures that have to be done before actual listing, so Caitlin is focusing on getting all that done. The restrictions of the past few months, which continue, have been tough on her, but she’s been doing an amazing job of staying positive.

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

Looking for Caitlin Updates?

“It’s part of why the idea of souls makes sense to me. This place is just like a ropes course for souls. A learning center. It never changes and the collective body of humans can never sustain their progress too too much or else there is not enough to challenge the souls. Imagine all the people living life in peace ✌️ John Lennon – well that wouldn’t really work if you believe we need to be challenged to grow.” —Caitlin O’Hara

March 8 – Pittsburgh

A quick update for all who have been so kindly inquiring. Caitlin’s here at UPMC Presby, completing the transplant evaluation. UPMC is great in many ways (the important ways). Food-wise, it’s 1950s, with meals served at 7:30, noon, and 5pm. It’s been tough trying to fatten up the kitten, but we’re figuring it all out.

We should have some transplant answers and a plan by next week. We are also hoping to get her out of the hospital, as it’s going on four weeks now, and that’s just this visit. Whether we will be able to wait at home or in Pittsburgh is still undecided.

For everyone who has asked for an address, thanks so much. But since she may be discharged soon, we would advise holding off on sending anything. The kitten always appreciates those emails and texts, though, and I’ve hung a bunch of photos from home on the wall opposite her bed.

I volunteer at the Brigham, and one thing I’ve realized is this: (Take note if you ever have to go into the hospital for something serious.) It’s important to hang up photos to 1) remember who you are, and 2) to remind the medical people that you are way, way more than your illness.