Saturday, August 23, 2014

A Book of Hope

About a year ago, a learned about a project that another parent advocate in a different disease community had been working on. He had asked the question of some of his peers, "If you could, what advice would you give to someone who was newly diagnosed?" The response he got was overwhelming, and he created a Book of Hope for the IBD Community.
Fast forward to this July when I was told that had sufficient resources to create and distribute this same booklet completely free of charge for another disease community, and asked if I thought that it was something that CF patients and families would embrace. It was a no brainer. I asked this question to other CF patients and families, "If you could, what advice would you give to someone who was newly diagnosed?" The response that we got was again overwhelming, and we created a Book of Hope for the CF Community. It's in the process of being printed, and will be distributed absolutely free of charge to anyone wanting a copy starting in early September. I hope you like it!
 (*Don't worry, this version has been every so slightly edited so that the print version will be void of grammatical errors.)


















Thursday, August 21, 2014

Our Story in US News & World Report!

Unfortunately I don't have an electronic copy to share right now, but this week US News & World Report published it's Best Hospitals 2015 Edition and we're in it! My favorite line in the whole thing is this: "Moore's experience, on a small scale, hints at the possibilities." Yes, it sure does, and those possibilities are endless!!

Thursday, August 7, 2014

Oh, hey August!

Well that summer just flew right past us now didn't it! We were on vacation for the month of July, and it was oh so good. We packed up and shipped out on July 2 for a week in Stone Harbor, NJ. That week was simply delightful. I don't usually have high expectations for vacations, with everyone in different beds and on different schedules, but this one just worked. We had a house with a pool and were 3 blocks from the ocean. The weather cooperated in the most fantastic way, with cooler temps and no humidity. We cooked meals at home and took naps everyday, and it all just worked out.
From there we headed north to Philadelphia for two weeks on the farm. We got to see friends that we only ever see once a year on our annual trip "home". I had a little getaway with a good friend to the Spa at the Hershey Hotel (if you've never been, I highly recommend it!) We had a Party for a Cure Fundraiser and raised $2000 for the CFF. I worked a little bit here and there (more on that soon), and we just had a really nice two weeks in PA.
My People





We ended our month-long extravaganza with a trip to Waterford, CT to visit my husband's family. I love New England and all things New England-y. We went to the beach, toured a submarine, took a ferry to Long Island to see some friends, visited with cousins, and enjoyed our last week away from home.

By the time that our visit to Connecticut neared it's end, I think we were all a little hungry for home. We packed up the car last Friday morning and headed west, and just 13 short hours later (or the equivalent of Frozen about 8 times) we arrived back in Cincinnati. It was very nice get home on Friday and have the weekend to get reacquainted with our home and our city before jumping back into the world of non-vacation living.

For anyone who follows this blog with any regularity, you'll be happy to know that we made this trip without a hospitalization. CF did not interrupt our vacation like it did last year and the year before. Perhaps that's what really made this trip a completely relaxing and rejuvenating one. Drew got sick when we got home, but just for a day. We've found a treatment plan that seems to work when he starts to get sick, and I'm so grateful for that.

I don't even know where to start with sharing about all of the wonderful things that have been happening in the world of patient engagement and advances in collaborative care for CF. I've started but haven't finished about 4 posts on all of that awesomeness, so stay tuned because I have a lot to tell the world about!


Thursday, July 24, 2014

You Kicked Her Out: An Open Letter to the American Association of University Women by Kristin McGuinness

An amazing CF Mama wrote this essay in response to this story in the news about a girl with cystic fibrosis and a discrimination complaint against a national women’s group

Dear American Association of University Women:
You kicked her out.
You kicked her out?
Devyn Solo, she is bright...determined...upbeat. I don't even know her, but I know that much about her. She is brave and empathetic too. I know these things because she is just like my daughter.
My daughter also has cystic fibrosis.
You would kick her out too, I suppose.
These bright girls...smart, vivacious, ready to go for what they want. You would read their applications and think “YES!” You would interview them and say afterwards “Wow!” You would peruse their recommendations and smile wide and and nod. These are the girls you WANT in your STEM program.
Responsible girls.
Smart girls.
Girls with sparkle and spunk.
Girls with dreams.
And you would send them letters saying “congratulations, you have been accepted...”
And then you would kick them out.
Because their cells misbehave.
Because they were born that way.
With cystic fibrosis.
Because they have to take pills when they eat. Which they have been doing on their own since they were 2 or 3 or 4 years old. Even at school. On their own. These pills pose no threat to other students, they are enzymes that everyone (without CF) manufactures in their bodies.
That is too much for you. So you kicked her out.
Because these girls would have to plug in a couple of machines to do breathing treatments and chest physiotherapy twice a day, you would kick them out. These machines...technology...engineering and math required to create and run effectively...these machines scare you? They must. Because you kicked her out.
Cystic fibrosis is a genetic illness; nobody else in your program was at risk. CF is a genetic illness, she did not ask for it. She asked for an opportunity. To learn and move towards her dream. And you gave it to her. But then you took it back.
You kicked her out.
These girls, Devyn and my daughter, they have so much more to deal with every day than most kids. They work really hard to stay healthy, to look healthy, so they can do the things they want to do. They face needles and x-rays and IVs and medication after medication...just to keep even with the other kids. And they try to stay positive about themselves, their talents and skills and their ability to make it through to their goals—college, a career, a family.
You were right there, ready to give Devyn a positive experience, to be a stepping stone towards her dream. And then you kicked her out.
Because you were scared. And uneducated. And untrusting of her.
You kicked her out.
You kicked her gut. You knocked a girl down. You made her question if she can do it...because she's sick. You crippled her sense of who she is; made her wonder what all the extra work is worth if she won't be allowed to do things that other girls can do even if she is healthy. You did not empower her. Not in science. Or technology. Or engineering or math. You kicked her out.
Shame on you.
And to Devyn, keep on shining. Keep on taking care of yourself and studying and being a positive young lady. You will reach your goal. You will make them sorry they missed out on the opportunity to have a girl who LIVES science and technology in their camp. Stay active and take your medication. Because with or without the AAUW, you, Devyn, kick butt!

Monday, July 7, 2014

Vacation

I'm on vacation and it feels so good. We're one block from the bay and two blocks from the beach. The weather is delightful. We're in a "No shirt, no shoes, no problem" kind of town. I'm writing this, only two days into our trip, so that I don't forget by the end of the week, when patience is low because exhaustion levels are high, just how good it felt, if but for a few days, to be on vacation.
Technically speaking, we will be "on vacation" for a whole month. We're not returning to Cincinnati until early August. We've started our trip in Stone Harbor at the beach for a week. Next we will head to Philadelphia, with a sidebar trip to Hershey, where I have a date with a good girlfriend and the Spa at the Hershey Hotel. We will wrap up our month-long vacation extravaganza in southeastern Connecticut before heading back to the midwest early next month, hopefully refreshed.
The lead up to this trip was a bit hectic. We needed new swimsuits and towels, sunscreen and water shoes. Medications needed to be ordered and shipped to arrive at the right place at the right time. I needed to coordinate schedules and hold the mail and pack a lot of stuff. So far, I'd say it's been worth it.
I've taken each kid for a walk, alone. I honestly don't think I've done that since my 6yr old was my only baby, and that was for a mere 18mo. We walked and talked, holding hands and making plans. We discussed favorite parts of our trip, which range from watching Frozen in the car to playing in the ocean with Pop Pop. They've each picked out a new hat and bough a little treat. I'm seeing how different they are individually than when they are together. I wish I had more time to dedicate to this. Often when I have an errand to run in the evening or on the weekend, I grab one kid to take along. This time we are spending together at the beach is different, because we've nowhere to be but here. We're just walking, exploring the island, and I love it.
I'm sure that by the end of July we will be ready for our own beds and our regular routine. There's something settling about falling back into your routine. There's also something real nice about being able to break out of it for a while. Cheers to vacation.

Thursday, June 19, 2014

An update on health and life

Drew had a clinic check up yesterday and I'm happy to report a clean bill of health. He has gained both pounds and inches, which has moved his BMI down to 61%, but it is still above 50th which is the CFF's healthy measure guideline. We hadn't done a culture in a while, mostly because his health has been good and also because we know what bacteria he is growing. I always wonder if something new might be there causing silent harm that we're unaware of, but knowing that an exacerbation is typically the culprit in lung damage and having not experienced that anytime too recently, we've forgone the test. It's a simple test, not unlike a strep throat swab, but the anxiety that accompanies it - the waiting and wondering and worrying, knowing that it's better to know while trying to embrace the bliss that is ignorance - that is the tough part. Drew doesn't even mind the test anymore, happily opening wide while I stick the swab down far enough to induce a cough without triggering a gag. I do the test at home for a couple of reasons. First, I'm perfectly equip to do it. Second, if we do it a week before our clinic visit, then we have the results to discuss when we go in for the checkup, versus having it done at the visit and then waiting for the doctor or nurse to call to discuss the results, catching me at the most inopportune times, like at the grocery store or while giving baths (both have happened).
Yesterday my husband took Drew to his appointment as I was out of town at a conference. The culture report wasn't final at the time that he was there, but it wasn't showing achromobacter, our nemesis and the bacteria that's been rotting his airways for the past year and a half. There was mild H.flu and normal oral flora, but no achromobacter. I knew that it would show up on the final report because it always does, but a little bit of me hoped that it wouldn't. The final report came through today and it did show mild achromobacter. Drat. I mean I knew, but I'd hoped. Such is life. Otherwise he is well and we are happy.
Work continues to move right along with the C3N work. We have patients in the CF Clinic in Cincinnati testing out the Orchestra platform  for self tracking and better communication between visits. We are meeting with the Telehealth Department next week to organize what we anticipate will turn into a pilot, allowing patients to participate in *some* clinic visits remotely. It's truly remarkable what we can do these days!
In other news, it looks like I will be speaking at the very conference where I was told just two years ago that the reason patients aren't invited is because they can be a distraction. The request that I received was in response to an abstract that I submitted called "THE VALUE OF PATIENT PARTNERSHIP IN IMPROVING HEALTH AND CARE IN CYSTIC FIBROSIS" and to quote the request, "We really think it is phenomenally important to hear from parents/patient pov." Yes, sir, it is.
The summer days have been both long and good to us. We are heading out east in a few weeks for a whole month! Our tour begins with a week in Stone Harbor, NJ followed by two weeks in the greater Philadelphia area before heading north to southeastern Connecticut to round out the month. Here's hoping we don't repeat our visits to CHOP in 2013 and 2012!
More news as it breaks!