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.  

Monday, January 09, 2017

Listed for lung transplant

My transplant hospital - Inova Fairfax

So, this post is a month in the making! After getting rid of half of my belongings, relocating to Arlington, VA, lots and lots of fundraising by treasured friends and supporters, and a year of tests, more tests, some tests, dieting, more dieting, a hospitalization and a big dental saga – I am FINALLY listed for a double lung transplant.

Some of the people I know who are going through the same process get kind of blue when they are listed. It is the last resort thing to do, and it’s super scary. For me, however, I felt like having a party! I celebrated with friends from Kansas that were visiting and I ate a hamburger. I was craving a totally unhealthy kind of hamburger and fries. I don’t think lung transplant is easy for anyone, and there are certainly other people (some in my pulmonary rehab group) who have issues just as rare – but I was never able to assume I’d get listed, even if I did everything right.

The anxiety I’ve lived with for the past few years was huge. After getting listed, it is as if all this tension left my body. I actually was using less oxygen for a few days, although that didn’t last. I felt so tired, and even sore from releasing all this tension. My concentration became worse than usual – and lately it hasn’t been good. You might say I was giddy.

I know a transplant isn’t a cure, and isn’t a sure thing. Too many of my close friends have passed away waiting, so I truly understand that, but at least for now, I’ve truly done everything I can do. Now, I just have to keep exercising as much as possible and eating healthy and avoiding germs. Besides that, it is just waiting. It might be another day, or another month, or another year. There is no way to know. Every time the phone rings, my stomach drops a little, even though my current lung allocation score is pretty low and the chances I’ll get a call are pretty slim just now.


As the holiday season went on, I couldn’t help but think that if I am going to live, there is another person out there, another family, for whom this past holiday season might be the last one. They likely have no idea something terrible will happen to them. It is also a little incredible to think that if I am going to live, these new lungs grew up somewhere else. They have a different family, different friends, different experiences that matter. So while I felt giddy to be given a chance, there is another side to this that is so sad. I have no idea where my lungs will come from, or who will make the decision that will give me a chance to live – and for their lungs to continue to live inside me. But while I have no idea who they are, or where they are from, or anything about them – I think of them every day. 

Sunday, January 01, 2017

Hundred People Search update

We have added three new members to the HPS Network patient registry. Actually, we added them a bit ago, and I just haven't been able to post it here.