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I will explain more about this photo later. I'm just testing right now. 

Eighth Annual HPS Network Conference Puerto Rico

The HPS Network Puerto Rico Conference will be on August 24th. Learn more about it here: https://www.hpsnetwork.org/en/events/2013-08-24/eighth-annual-hps-network-conference-puerto-rico

The guy with the lungs

I’m just back from attending the American Thoracic Society. I have lots to blog about that, but this isn’t the entry that will have a lot of commentary about the meeting. It’s working better for me to write in pieces of memory. 

I have a sort of plan for my lung transplant one day. I know the transplant center at Fairfax in Virginia is HPS friendly. By that I mean they’ve been willing to take on an HPSer for lung transplant. I know I wouldn’t have to overcome the education phase about the bleeding disorder of HPS there. They’ve already learned it. My brother lives quite close so I know I’ll have a place to live within the drive zone of the center. 

Mind you, I have no idea if by the time that day arrives, I’ll even be a candidate for transplant, but it makes me feel better to assume I will be, and that I have a plan. 

The doctor at Fairfax is Dr. Nathan. I’ve seen him at ATS meetings and heard him talk, but never really shook his hand. 

At this ATS meeting I got the chance! 

Donna and I attended a continuing education session for physicians on diagnosing and treating pulmonary fibrosis. Dr. Nathan was one of the instructors. So, being the Heather that I am, I went up to the front of the room after the class and patiently waited for all the doctors who wanted to ask one-on-one questions to finish. Then I bounded up to the poor man and said, “Hi, my name is Heather Kirkwood, and I’m coming your direction – hopefully not for a long time – but you are my plan.” He sort of looked like a deer in the headlights, as if he wasn’t sure what to say. Then he shook my hand and said it was nice to meet me. I explained I had HPS, that my brother lived close etc. 

Looking back I feel kind of sorry for the guy. It wasn’t a venue where one expects to meet a patient. I’m not sure if I came across as myself either. While I was waiting for the other doctors to ask their questions, I suddenly felt very nervous and anxious. It dawned on me. This is the guy. This is the guy who someday might have my lungs! 

Not a safe book, but so far, a good one

I got up the nerve to look again for the book by the author I heard on the radio. I have a temporary reprieve. I couldn’t find it as an audio book, at least not yet. 

It’s been a problem lately. Several of the books I want to read are not yet available commercially as audio books. I keep meaning to reinstate myself with the Library of Congress program for blind and print impaired people as they might be available there, but somehow it never gets done. 

I’ve taken to not allowing myself to buy a book unless it’s an audio book these past few years. I can see well enough to read print books (with various magnifying devices) but I find the only time of day I can set aside to read is before bed. It’s the time of day when my eyes are most tired and thus reading with a CCTV or a magnifier is not only awkward, but my eyes are just too tired by then. It is one of the reasons I really do wish I had learned braille as a kid, even if I can also read print. 

So today I treated myself to an early birthday present. I bought the audio book My Beloved World by Sonia Sotomayor. Sotomayor is a Supreme Court justice and she is of Puerto Rican heritage. The book is a memoir. 

One of the blessings of learning I have HPS is that it has opened up a whole new part of my history, my family tree. It has made me curious about everything Puerto Rican as I’ve come to have so many Puerto Rican friends and to visit the island. 

Is it possible that DNA can have a memory as if to be a dream? The logical part of me says of course not. What a silly romantic notion. Yet because of HPS, because of that connection to Puerto Rico through my mother, I’ve discovered this whole other part of my heritage. I wonder if my cousins who do not have HPS have any of that sense of attachment to a place no one in our close family has lived since the early 1900s? 

There must have been someone, somewhere, in that family tree from Puerto Rico who had HPS. They wouldn’t have known it most likely. They most likely had bad vision and sensitivity to light. How did they cope? What was their life like in such a hot and sunny place? Did they have the GI issues I’ve had since my late teens? Did they ever have lung disease? How did they cope before some of the comforts (if not cures) of modern medicine? 

It’s the first night and I got as far as chapter seven. Honestly, if I didn’t have to get up in the morning, I’d keep reading. Sotomayor is a good writer. If I was trying to avoid a book that would make me emotional or even cry, I’ve failed miserably. 

I am surprised at how very open she is about her family history. She’s a wonderful story teller and I relate to so much of what she says so well. 

I can’t write about my own family so openly. I’ve shared a lot of personal things on this blog over the years, but for the most part, that is a subject I’ve left untouched. 

It isn’t that I couldn’t tell some good stories, or emotionally moving stories. Instead, it’s this feeling of protectiveness I have for my family. I might choose to put my life and HPS experience out there – to let a documentary film crew follow me around NIH and ask me lots of questions – but my family has never made that choice. 

As for all of those emotions so close to the surface, yet held at bay, perhaps this book is just a smidge safer than the other one. Perhaps it’s a way to ease into some of those emotions I need to tap into for creativity. 

I know it is common wisdom to “get it all out” – but I’m not convinced that in every situation that is true. My HPS life, and all of the other aspects of my life that have been touched by it, are an ever moving and ever evolving thing. Even if it were possible to purge every hint of negativity, every ounce of sadness or mourning or anger or frustration, they would only be replaced again. It is in our case not an event to bee gotten over, but a continuing thing we all learn to manage in different ways. 

Expectations

Today I heard another radio interview with another writer whose book sounded interesting. At first I was sure I was going to add it to my list of books I need to read, but as the interview progressed, I wasn’t so sure it was a book I should read. 

Instead, it started to sound like it might fall into the same category as sad movies, which I now make it a point not to watch. 

Sad movies provoke emotions that a good cry in most people would solve. I have so much pent up inside that sometimes a good cry is only opening a Pandora’s Box. It’s just too hard to put all of those emotions away again. And since they are not emotions about a specific event or tragedy at a specific point in time from which one can heal with lots of good cries, I elect to just not watch sad movies instead. 

This book is about a woman whose life goals and dreams never came to be. The author read the first few paragraphs of the book and I was wowed! It was a rant about her frustration that life had not been what she imagined. It was powerful. It could have been written by me. The author talked about how she wanted to write about anger. 

I stopped looking on iTunes to see if I could find the book. Anger? What if in this book the main character never gets over her anger? Am I sure I want to read this book? Will it set off the same Pandora’s Box of anger that I worry could be unleashed by sad movies? 

It took years, but I’m pretty proud (maybe too much so) of getting to a place in my life where I don’t harbor anger about the way things should have been or the way I should have been treated. Sometimes those feelings rise to the surface, but they are quickly gone. That has taken work. 
It has taken work because indeed I do feel like of all people, I have the right to be pretty pissed off about a lot of things in my life. 

Anger is an okay emotion, only as long as you don’t live there. It’s a place you visit when you need to, but if you live there, it can ruin everything else around it. It can stain the good parts of your life. It can blind you to other blessings and gifts that make the wrongs easier to live with. 

I haven’t decided about whether I will read this book. Perhaps that is why my writing has been so dull lately. Perhaps it is why my stories don’t get off the ground. To get through everyday life I have to leave some of these emotions untapped. To unleash them could cost too much. 

HPS Network attends Guarde La Fecha: Conferencia de Salud y Bienestar de El Bronx

Brenda Lopez, representing the HPS Network, attended Guarde La Fecha: Conferencia de Salud y Bienestar de El Bronx at Fordham University in April. The event offered a wide variety of seminars on various health topics and attracted the read more: 

The big wide world of research

Some of the HPSers have been having a conversation lately about the state of research. We are an impatient group. You can’t blame us. We’re watching our friends grow sicker, need lung transplants etc. We have an ever growing younger generation as people get diagnosed earlier and earlier, and we want them to have a future better than ours. 

Yet research seems to move so slow. We are all a bit sad that currently there is no clinical trial on the horizon. 

Sometimes it’s a matter of perception. When the drug trial was underway HPSers were in and out of the NIH all the time. They would share about their trips and there was a tangible feeling that things were happening. 

Now, things are happening, but we don’t hear about them as often. We hear about them at conference for a day. I know (because I’m on the board) that there’s more afoot than even was shared at conference, but was so preliminary, it wasn’t appropriate to share in a public setting with patients. The thing is we don’t see that. 

It’s amazing how quickly the excitement of one day of research updates can be overwhelmed by the day to day realities of living with HPS. 

I wish I could be a fly on the all in labs working on HPS. I wish I could visit to take a picture of our researchers hard at work. I know they are, but I want to show everyone. I want them to see it in a more real way. 

In the meantime, this article was shared with me today. It’s a reminder that not just HPS research moves forward. Research in general moves forward and somewhere out there, will likely yield a discovery that will, one day, help us as well. 

Here’s the article. PLEASE keep in mind it’s early going with this idea, and it seems from the article, it’s only intended for emergencies. But imagine, if there was a drug that could put oxygen in our blood without needing our lungs to work at all. Wow! 

http://www.techwench.com/scientists-invent-oxygen-particle-that-if-injected-allows-you-to-live-without-breathing/

Where have all the words gone?

This morning I heard an interview with an author on the radio. Apparently, he’s quite famous, although I hadn’t heard of him. I guess I haven’t had as much time lately to be very well read. Or, I’ve had a lack of variety in my reading. He was very funny in the interview, and when he read some from his latest book, it did make me want to look it up and buy it. 

Somehow, however, it left me feeling frustrated. As I said on a previous post, I feel like my writing has gone downhill. I’m out of practice, and writing does involve some sort of secret brain muscle that if not exercised, gets flabby. 

All morning I’ve been thinking about those short stories I’ve wanted to write. The plots remain very undeveloped. They are just a general idea – like a twinkle in a parent’s eye years before a baby is born.

I don’t want to give away the concept. Without saying too much, I want them to illustrate some of the lessons I’ve learned living with HPS. They won’t be about HPS but perhaps inspired by it. 

Still, I’m having a hard time nailing down the specifics. 

When I took writing classes in college, they encouraged free writing – just writing down whatever comes into your head no matter how disjointed or silly. I guess I should try that to get those old writing muscles working again. 

Hundred People Search

Busy day! We just added another HPSer to the patient registry. This puts us at 95 to go on this year's Hundred People Search. 

Whitehead Institute and HPS Network Celebrate Rare Disease Day

The Hermansky-Pudlak Syndrome Network (HPS Network) was one of four rare disease patient advocacy groups to partner with the Whitehead Institute for its celebration of Rare Disease Day on Feb. 28th, the International Rare Disease Day Forum. 

Carmen Camacho and Frankie Feliciano attended the event and held a screening of the documentary RARE. 

Read more https://www.hpsnetwork.org/en/news/2013-05-03/whitehead-institute-and-hps-network-celebrate-rare-disease-day