Monday, April 10, 2017

Hundred People Search

We have a Hundred People Search update! There are three new people on the HPS Network registry, one from overseas. I'm always especially happy to see those as HPS is so rare, we can't afford to be divided by international borders. Keep up the outreach!

Tuesday, April 04, 2017

Celebrating 100 years


Recently my grandmother (grandma) Meribel Cockerill passed away. She was born on July 11, 1917 and passed away on March 23, 2017. I can’t even imagine living that long!

Friends are telling me they are sorry for my loss. I am sorry, but celebrating. She was not well for many years and honestly, she was miserable on this earth.

Most of my life I never lived near either set of my grandparents. I did, however, live with my grandma Cockerill for six months after my ostomy surgery. It was one of the blessings that came out of a pretty horrible year.

My grandfather had just passed away, and my mom had to return to her job in Germany. I was a LOT better than I had been during the nearly two months I spent in the hospital – but I wasn’t well enough to go back to college or be on my own. Often staying at my grandparents could be stressful. I couldn’t drive, so I couldn’t get out to go to the mall or grab a hamburger. My grandparents didn’t have 18 plus years of experience raising a child with a visual disability, so they were constantly worried about me. Even just going to walk around the building to get fresh air could create anxiety for them and result in tension between us.

When I came to live with my grandma after my surgery, however, walking to the elevator from her apartment was an accomplishment. Day by day I would go a little further and she was okay with it. We got along perhaps the best that we ever did. We really needed each other. I wish I had appreciated more at the time how much I wish I could have asked her now. Her mind was still together then, and it would have been such an opportunity to learn things I wish I knew now.

My grandma Cockerill’s maiden name was Hernandez. Her father, Jose Hernandez, had come to the mainland United States to go to college from Puerto Rico. I didn’t know I had HPS then, or how much I’d wish in later life that I had a way of contacting distant relatives in Puerto Rico. At that time she was in touch with a living cousin who had been a school psychologist.

Sometimes she would tell me stories about visiting her grandma in Puerto Rico as a kid. It wasn’t a simple flight like it is now. They would take a ship – often from New York – and then spend months on the island. Considering that they lived in Oklahoma, that really was quite a trip!

My grandma was the first person who tried to teach me to knit. My parents had gone on a trip for a week, and my grandma and grandpa had come to take care of Ryan and I. At that point in my life I wanted to be Laura Ingels Wilder when I grew up. Knitting seemed like a pioneer kind of thing to do. We went to the store and she bought me some yarn and knitting needles. I never finished the project since, after a week, no one was around to help me. What I knitted was supposed to be a scarf, but it sort of turned into a triangle with a bunch of holes in it. Yet, decades later, when I made my second attempt to learn to knit in college, I did still remember how to knit and purl. Grin!

When my grandma was sick this time, out of curiosity I looked up news headlines from about the time of her birth. She was born weeks before the first draft card was pulled to send troops to World War I. Aviation was just getting off the ground – pun totally intended. Now, we have rovers on Mars sending back photos and videos from the planet’s surface. I’ve seen the stars (via the rover camera) from the vantage point of standing on Mars.

When she was born, no one listened to radios. Today, we have the internet and I regularly communicate with friends around the world.



Although we will greatly miss her, I know she’s happy and whole with her friends in family in heaven. I just hope I don’t join her there anytime soon. While I doubt I’ll walk the Earth 100 years, I still have a lot to do here!

Wednesday, March 29, 2017

Hundred People Search

It is that time of year again - the time of year when the Hundred People Search (H.P.S) starts over again. We are kicking off the year with two new members on the HPS patient registry. That means we only have 98 to go by next year's conference! It's a big task, and honestly, we've never hit 100. Perhaps this is the year that can change that.

What is the Hundred People Search? It is an outreach challenge to the community of those impacted by Hermansky-Pudlak Syndrome or HPS. We dream of a year when there is no one to find, but sadly, that just isn't in the cards. Together, as a community, we dream of better treatments, and someday, a cure - but that can't happen unless the HPS community comes together. We have to find one another, all over the world and not just in the United States, to show researchers we are here, we are willing and we need a cure!

We are limited by being rare, and by not having millions to spend. So, it is up to us and our supporters! Many are involved in the albinism community and many others are involved in the Puerto Rican community (most affected by HPS). They are best placed for grass roots outreach to find others with HPS.

It is up to everyone whether they want to be more deeply involved in the community, or just sign up so that they can learn about research, meet others in the same shoes and join in to help us in the journey to find a cure. Everyone copes differently. It is vital for all of us, however, that we find those impacted by HPS around the world so that someday, we can find better treatments, and a cure, for all of us.

Thursday, February 16, 2017

Hundred People Search

We have added a new HPSer to the patient registry. This puts us at 70 to go for this year's Hundred People Search initiative. We only have three weeks to go for the year. If you know an HPSer who is not registered with the HPS Network, please ask them to register with us - no matter where in the world they live. It is free and it helps promote a cure for all of us!

Tuesday, February 14, 2017

National Donor Day – a special kind of Valentine

Today is National Donor Day – a day to highlight the very special gift that those who agree to become organ donors give to the 120,000 of us currently waiting for new organs in the United States. It is the kind of gift that words fall short of. Hallmark doesn’t make a card for this. How could they? 

I’ve noticed from the experience of some friends who have received their lungs that the time frame before you are allowed to contact (through UNOS) your donor family has changed. They told me in my transplant education that while I was still in the hospital, I’d be given a card to send to my donor family. It is, of course, up to them whether we ever make contact. I know if they are willing, I will want to do it. 
I can’t imagine writing that kind of thank you note, especially while still in the hospital – but I could never not do it! I’ve been thinking of writing a note and having it in my things ready to go so that it is well thought out, and ready to go. 

What do I say? I’ve spent a lot of time thinking about it lately. Do I tell them about my anti-bucket list? (It’s the list of things I’m looking forward to doing when my lung function is normal again.). Do I tell them about my life before the transplant? How does that not sound like a resume for my lungs? I want them to feel that their loved one’s lungs have found a good home, and that I am somehow worthy of such a gift. Just thinking about it makes me teary. 
A few weeks ago I was watching a medical drama. I used to love those kinds of shows, but have been watching them less frequently these days. This particular episode (fiction) followed a family as they decided to donate their loved one’s organs. They went from hope to resignation. I know better to believe that this dramatization was anything like what families donating a loved one’s organs might experience. Spending a lot of my time in the medical world, I know these shows make sacrifices of fact and reality for the needs of an hour-long drama all the time. Still, even so, I was balling. I think I cried for 40 minutes. 
I think about this family whose path will cross with mine someday a lot. 

So, on this National Donor Day, let me just say THANK YOU! to the live donors and donor families out there. What a gift you give us. It isn’t just the gift of life, it’s the gift of hope. 

Thursday, February 09, 2017

First pre-transplant check up

Last week I had my first transplant clinic appointment after being placed on the transplant list. It was pleasantly non-eventful. I’d been fighting a sinus problem of some type, and was very worried that, although I didn’t have a fever, it might somehow be of more concern should I get “the call.” Thankfully, that was not the case, and the sinus problem is improving and almost gone. It has just taken forever. 

I wasn’t really nervous about this appointment and didn’t expect anything to happen, yet somehow, when I was in the waiting room I suddenly did start to feel pretty anxious. Although I am finally on the list, I could also get taken off the list, should I develop any medical issues that might prevent the transplant from being successful.  I was actually quite surprised that I suddenly felt anxious. Ryan was not with me for this appointment. Indeed, it was the first transplant appointment I’ve ever done without someone with me. Even if there isn’t much for Ryan to “do” at these appointments, when you’re undergoing stressful medical stuff, it is so helpful just to have someone to visit with in between tests and appointments to keep your mind from wandering to places it should best not visit. 

I’m quite used to managing my medical stuff on my own and usually don’t take anyone to appointments. But, having watched so many friends go through the process, I know how important the support system is for a successful transplant. It is a lot to learn and it is important that the people around me are as in the loop about transplant as I am. Also, I knew that as a single adult, my support system would likely get more scrutiny than if I were married. I wanted to make the point that it was real and capable system – not just a few names I was jotting down to check off a box somewhere. 

Results? Happily, there are no changes since my last appointment. I even did a tad better on the six-minute walk. The distance was almost exactly the same, but my oxygen levels were a tad better. I have no idea why, but it doesn’t much matter. 

To calm myself I tell myself that at this point, the tests don’t really matter much. As long as I am listed, status quo means status quo, and worsening numbers only mean my lung allocation score goes up. I am not sure; however, if that coping mechanism will hold should there be a big change. You just never really know until it happens. 

Monday, February 06, 2017

Hundred People Search update

We have added a new HPSer to the patient registry. That leaves us at 71 to go on the Hundred People Search (H.P.S.) Keep up the outreach!

Thursday, February 02, 2017

Hundred People Search

We have added a new HPSer to the HPS patient registry - that makes 72 to go for the Hundred People Search (H.P.S.)

Wednesday, January 11, 2017

Hundred People Search update

We have added two new HPSers to the HPS Network patient registry this week. This puts us at 73 to go for this year's Hundred People Search (HPS). Keep up the outreach! 

Tuesday, January 10, 2017

A press release of interest to those who work for the federal government

Today this press release was in my inbox. I'm posting it because I have so many blind friends that work for the federal government. This may or may not impact you - I don't work for the government, so it is governmentese to me - but here it is: 

FOR IMMEDIATE RELEASE

CONTACT:
Chris Danielsen
Director of Public Relations
National Federation of the Blind
(410) 659-9314, extension 2330
(410) 262-1281 (Cell)
cdanielsen@nfb.org

National Federation of the Blind Applauds Issuance of "508 Refresh" Regulations

Baltimore, Maryland (January 9, 2017): The National Federation of the Blind, the nation's leading advocate for blind Americans to gain equal access to information and technology, today applauded the publication of new technical standards to bring information and communication technology (ICT)  into compliance with section 508 of the Rehabilitation act of 1973, which requires government agencies and contractors to make their electronic information and technology accessible to the blind and others with disabilities.

Mark A. Riccobono, President of the National Federation of the Blind, said: "Information and communication Technology has changed a great deal since the last Section 508 regulations were issued, and has become an even more integral part of everyday life. Yet blind people, particularly blind federal employees, continue to struggle with access barriers when interacting with electronic and information technology used or procured by federal agencies. For these reasons, we are extremely pleased that the new Section 508 standards have finally been published. Government agencies and contractors should now understand how to make information and services accessible to the blind, allowing federal employees to perform their job functions effectively and other blind Americans to exercise our rights and responsibilities as citizens."

In 1998, Congress amended the Rehabilitation Act of 1973 to require Federal agencies to make their ICT accessible to people with disabilities. Section 508 was enacted to eliminate barriers in information technology, open new opportunities for people with disabilities, and encourage development of technologies that will help achieve these goals. The law applies to all Federal agencies when they develop, procure, maintain, or use electronic and information technology.