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January 2009 - Posts
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The following story appeared in the Washington Post. As lung transplants are a topic of interest to many in the Hermansky-Pudlak Syndrome community, I thought some of you might be interested in this information. Donna pointed the study out to me. Happy reading: Lung Transplant Outcomes Better at High-Volume Hospitals
» Links to this article Wednesday, January 28, 2009; 12:00 AM WEDNESDAY, Jan. 28 (HealthDay News) -- Hospitals that perform at least 20 lung transplants a year have the lowest death rates for this complex procedure, according to Johns Hopkins researchers. They said their findings could serve as a patient safety benchmark or standard for hospitals nationwide. The researchers analyzed data from the 79 American and Canadian medical centers that perform lung transplants. At the roughly 20 institutions that perform, on average, 20 or more lung transplants a year, the chances of an organ recipient surviving the critical first month after transplant are more than 95 percent, and the chances of surviving the first year are 83 percent. The rates in hospitals that perform two or fewer lung transplants per year are 90 percent and 73 percent, respectively. To read the full article, go to: http://www.washingtonpost.com/wp-dyn/content/article/2009/01/28/AR2009012802661.html
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Warning - to the non-HPS'er, this might fall under the heading of too much personal information. Read at your own risk.
I need to post a health update. Honestly, I sort of hate doing it. But, the point of this blog is to help document day-to-day life (in my life anyway) with HPS as well as to help document things for my own care. I’m getting sort of sloppy about this lately.
I think it’s because I’m spending so much time filing out depressing disability paperwork that by the time I deal with that, the last thing I want to do is whine some more about my issues. But, I do need to sort of keep track of this stuff.
It’s sometimes amazing to me (and I remember this from my super sick days in college too) how you can feel so amazingly crappy at one point, and a few hours later, so much better. But those crappy times can really interfere with day-to-day life.
My bowels are acting weird and I need to start documenting it to figure out if it’s medication related or something else maybe I need to be mentioning to one of my doctors.
Yesterday, for example, was diarrhea day. I was up most of the night the night before last with the runs. And after a few hours of empting my appliance every hour, the code browns started up.
The skin around my stoma doesn’t look too bad. There’s a little raw spot right at the base of the stoma, but it seems like the stoma its self, right around the base, is bleeding some and feels sore.
Then last night and this morning it was constipation day. Because I seem to be going back and forth between these extremes, I hadn’t taken anything. Last night I had to leave Homers because of a code brown. It felt as though the stoma was just straining against the appliance and the poo just sort of sat there right on the stoma, probably melting the seal, thus the code brown that time.
This morning I was slow getting going because my stomach was all crampy. The cramps weren’t horrible, but uncomfortable. They feel like female cramps, only it isn’t time for that.
This afternoon, as if someone had flipped a switch, we were back to the runs. I ate some nachos (okay, maybe not the best choice) and went to Homers. By the time I got to Homers I was having a bathroom emergency. My pouch was filling up like someone had turned on a faucet and my tummy was cramping again, this time more painful. The sweat was starting to form on my brow as I danced around outside the bathroom.
This poor lady was in there forever! I nearly went to the men’s room for fear of a poo explosion. It made me think of my own long history of bathroom episodes when someone was probably wondering if I’d ever come out again. I could hear the toilet flush and thought, okay, she’s almost done. Then I heard the sink – then God only knows what she was doing. I thought I was in big trouble!
My blood pressure has been hard to regulate, so I’m taking it often now. I really need to have a talk with a doc about these meds. It seems like my blood pressure “needs” are different depending on the day. When I’m having a diarrhea day, I start having dehydration issues and my blood pressure goes much lower. On other days when I’m running around and more active, it runs higher and seems to need more umph to keep it in the right range.
The other thing is I don’t seem to tolerate the low blood pressures well. What wouldn’t be that low for some seems to make me dizzy and very tired feeling.
The night before last I also had another code red thanks to the skin issue. It seems like things are all good again. But one of the scabs over one of the sores must have come off in the night. The skin is so dry. I woke up and had blood all over my nightgown and sheets. The sheets are red so I don’t think the stains will be that noticeable – but the nightgown is beyond help. That’s the third nightgown I’ve had to throw away for some sort of massive bio-stain in two months. Ahhh…like I can afford that.
Last weekend I had another cold. I felt horrible Saturday and spent the entire day in bed. Thankfully, this cold came and went rather quickly, although I’ve still got a bit of a dry cough going on.
My fatigue and wacky sleep schedule seems a bit problematic if I hope to operate in the real world. I think part of the problem, however, is that when you’re up most of the night with issues, even just one day a week (and for me it’s more than that), it’s like constantly having jetlag without the bonus of an international vacation.
I try to force myself to keep to a reasonably normal schedule, but eventually I just get to feeling so tired that I give in and sleep too long and then I’m all off again.
On the good news front – we did have a bit of sunshine and I went for some nice walks. I really, really needed some exercise. I was worried I’d been cooped up long enough that my endurance would be down again, but I did okay. And, despite the bowel trouble, my joint pain hasn’t been bad (except occasionally in my fingers) and my acid reflux seems well controlled right now.
NIH did put me on iron, which could be affecting my bowel. I’ve also been on antibiotics again, which could have my bowel “balance” disturbed. I think I just need to make myself start paying more attention.
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This information came across my desk yesterday as well. I know I've mentioned this scholarship here before, but here's a reminder as the deadline is coming up. National Federation of the Blind2009 Scholarship Program
Each year at its national convention in July, the NFB gives a broad array of thirty scholarships to recognize achievement by blind scholars. All applicants for these scholarships:
must be legally blind (PDF document) in both eyes, and
must be residing in the United States, the District of Columbia, or Puerto Rico, and
must be pursuing or planning to pursue a full-time, postsecondary course of study in a degree program at a United States' institution in the 2009 scholastic year, except that one scholarship may be given to a person employed full-time while attending school part-time, and
must participate in the entire NFB national convention and in all scheduled scholarship program activities. (Read "More Than Just Money for School" by Anil Lewis [available November 15th])
In addition to a scholarship, each winner will be brought to the 2009 National Federation of the Blind Annual Convention in July at Federation expense, providing an excellent opportunity for high level networking with active blind persons in many, many different professions and occupations.
The scholarship application deadline is March 31, 2009, 5:00 p.m. Eastern Daylight Time.
What kind of student wins an NFB scholarship? Read about past NFB National Scholarship recipients in the August-September issues of the Braille Monitor.
Braille Monitor August-September 2008Braille Monitor August-September 2007
Braille Monitor August-September 2006Each year’s Scholarship Application information is made available online, by mail, and in the November issue of the Braille Monitor (available in large print, Braille, cassette, and online). To apply for a scholarship online, please begin here:
About the NFB Scholarship ProgramSubmissions ChecklistApplicant InstructionsFrequently Asked Questions (Scholarships FAQ)2009 Scholarship Application Form—Online Edition2009 Scholarship Application Form—Print Edition (Word document)Confirmation of Legal Blindness (PDF document)2009 List of Scholarships, $12,000 to $3,000NFB Divisions, Groups, and CommitteesAll questions should be directed to the Chairman. Email is preferred.
NFB Scholarship CommitteeMr. Anil Lewis, Chairman Office: (410) 659-9314, x2415E-mail: scholarships@nfb.org
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Letty sent this along to me today. I'm just posting it here to share with anyone interested. We are receiving applications for our 2009 Scholarship and Career Awards. Please share the following information with anyone you know who may be eligible.
Five scholarships are awarded across three categories: College-Bound, Undergraduate and Graduate. The criteria for eligibility are that applicants:
- Must be legally blind (i.e., have a best corrected visual acuity of 20/200 or less in the better eye, and/or a visual field of less than 20 degrees in the better eye).
- Must be US citizens, and reside and attend an accredited school in any of the following states: CT, DE, FL, GA, MA, MD, ME, NC, NH, NJ NY, PA, RI, SC, VA, WV and VT, or Washington, DC. Proof of citizenship will be required of all winners.
Scholarships are based on academic and personal achievements, and candidates are not required to demonstrate financial need.
Previous winners (in any category) of Lighthouse Scholarships, current Lighthouse employees and members of their immediate families are ineligible.
To learn more about the Lighthouse Scholarship and Career Awards program and to download an application, please visit our web site at http://www.lighthouse.org/sca.
The 2009 application deadline is Sunday, March 1, 2009 by 11:59pm. The application and all requested documentation must be submitted via email at sca@lighthouse.org.
If you have any questions regarding the Scholarship and Career Awards program, please email us at sca@lighthouse.org.
Thank you for your help with promoting our Scholarship and Career Awards program.
Rowena Saunders, MSOL
Vice President for Volunteer Resources
Lighthouse International
111 East 59th Street, 8th Floor
New York, NY 10022
Office: 212-821-9405
Fax: 212-821-9687
Mobile: 347-573-3752
Email: RSaunders@Lighthouse.org
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Below is a message I got from Sharon Terry, President of the Genetic Alliance. The Genetic Alliance, in cooperation with some other groups, has a family history project underway. The idea is that you and your doctor can much better target preventative care and identify other problems sooner by knowing your family history. If you've ever had any interest in documenting your family's medical history etc. here is a call-in number Thursday night to help you get started. Although the PSA and the phone bank is local to the Washington DC area, anyone can call the number. Here's the info if you're interested: Hello everyone,Did you know that there are steps you can take to prevent health conditions, simply by knowing your family’s health history? Most Americans don’t! That’s why Genetic Alliance and The American Society of Human Genetics, in partnership with WJLA-TV ABC 7 (the local ABC affiliate in Washington, D.C.), launched a Family Health History Public Service Announcement (PSA) Campaign to raise awareness about the importance of knowing your family’s health history and sharing it with your healthcare providers and relatives. Call the live Family Health History Phone Bank at 703-647-1533 to speak with healthcare professionals during WJLA-TV ABC 7’s local evening news program from 5:00-6:30 p.m. on Thursday, January 29, 2009. Health and wellness experts will be on the line to answer any of your questions about family health history, from how to collect it to how you can use the information to improve your family’s health.Knowing your Family Health History is a first step toward a healthier, happier you! Please forward this message to your family, friends, neighbors, co-workers, and healthcare providers in the Washington, D.C. area! For more information about the Family Health History Campaign, visit: www.talkhealthhistory.org <http://www.talkhealthhistory.org/> or wjla.com <http://cfc.wjla.com/> , keyword "family"Best regards,Sharon *The Family Health History Live Phone Bank is brought to you by Aetna, The American Society of Human Genetics, F.O.R.C.E., and Genetic Alliance.
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I got an answer from Yahoo about the spam filter issue. It was polite, but didn't correct my problem or anyone else's problem. It did suggest, however, that those having this problem write to Yahoo! It would be helpful if anyone else is having the same issue to write to them so that they are increasingly aware. I'm copying the answer below - and I did e-mail Eric back and asked him how to follow this further. If I can't do it on behalf of my groups - which seems silly to me - then at least I can do it on behalf of myself. In the meantime, I'll start researching how to get to someone higher up at Yahoo! Here's the response below: Hello Heather,Thank you for writing to Yahoo! Groups.I understand that you are concerned with the blind members of your Groupconfronting the captcha box.Heather, thank you for contacting us on behalf of other Yahoo! users. We'd love to help resolve their issue; however due to privacy concerns, we will need to ask them to contact us directly for assistance. Please feel free to forward this email to them or direct them to the following page so they can contact us: http://help.yahoo.com/l/us/yahoo/groups/original/Thank you for your understanding.Thank you again for contacting Yahoo! Groups.Regards,Eric
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I know there are many of you out there that are techie gadget nuts. I know because so frequently we're trading advice on the listserv about the mobile phone that's the easiest to read, or the computer that has the best built-in adaptive technology. Well, I found a Webcast that just might interest the techie-gadget devoted. Apparently a partnership has been formed between the National Federation of the Blind and some other companies etc. to promote blind friendly consumer electronics at the Consumer Electronics Show. The Webcast essentially is a recording of an interview about the project in a hotel room. I was sort of hoping for some footage from the show floor and some examples demonstrated for the camera. I'm guessing it was difficult to get the necessary permission for that. But for those who are interested in things techie and blind friendly, you might enjoy hearing about the project. Go to www.nfb.org - It's the Straight Talk about Blindess Webcast episode 23. Right now it's at the top of the Web page. I'd include the video clip here, but I couldn't download it.
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Recently I've been experiencing a problem with Yahoo! that seems to be increasing in frequency. I'm hoping to hear from any other blind/visually impaired people encountering the same thing.
In a great and needed effort to thwart the spammers, occassionally when you hit send on a Yahoo! e-mail a screen comes up asking you to type in a set of letters and numbers that appears in a little box. The letters and numbers are made intentionally difficult to read so that automoatic spam programs can't get around them. The trouble is when you make something difficult for the general public to read, you can only imagine how hard it becomes for those of us who have low vison or are blind.
Some Web sites that use similar spam thwarting efforts have an accessability link where there's an audio file to listen to the letters and numbers. It's annoying to have to do that, but at least you can. Yahoo!, as far as I can tell, offers no such alternative.
I've e-mailed their tech support twice now and am waiting for a response.
I'm concerned if we don't address the issue now it will become a real problem for the HPS yahoo groups, not to mention the other 46 yahoo groups devoted to albinism alone - let alone all the other groups for all the other visual impairments.
It might be helpful if others complained to tech support. And, I'll let you know how it goes with them.
It seems to me that if Target can lose a lawsuit for not having a Web site accessible to the blind, then one of the leading internet search engines and e-mail providers, Yahoo! should certianly meet the same criteria to fall under the Americans with Disabilities Act.
Hopefully we can get this fixed quickly and easily with no fuss. Since my first letter went unanswered, I am a tad worried.
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 I like this pic of the memorial because I like the lighting.
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 This is another pic from the WWII memorial. Each pillar represents a state or territory of the United States.
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Please say a prayer for our friend Janet. Janet was only the third HPSer to get a lung transplant. She's been doing great!!! Today we learned she's in the hospital, although already seemingly on the mend. Pray she continues to get better and gets out soon!
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This is a story many of us have been following closely. Some of you have wanted updates. I don't have much information to update - however, here's a story being run by the BBC. It's the latest I've heard. Tanzania witchdoctors flout ban
Tanzania's only albino MP has been trying to fight prejudice
Witchdoctors in Tanzania are defying a government ban announced on Friday, intended to stop the killings of people with albinism for ritual medicine.
A BBC correspondent has seen at least 10 witchdoctors are working openly.
It comes days after the latest murder of an albino man in Tanzania brought the national death toll to at least 40 since mid-2007.
The killers reportedly sell albino body parts - including limbs, hair, skin and genitals - to witchdoctors. To read the full story, go to: http://www.facebook.com/ext/share.php?sid=45877839132&h=R2XRo&u=FjoXh
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I’ve been meaning to put this up and just haven’t gotten to it. January is almost over, but it was National Donate Blood Month. It’s never too late to celebrate if you’re in the mood. Every day is a good day to donate blood if you’re able.
I would not be here today were it not for all the good people in the world who show up regularly to donate blood. When I had my bowel surgery in 1993 I required more units of blood than I can remember. I’ve also required platelet transfusions at least four times in my life so far – and it’s likely to happen again.
At any time those of us with HPS could find ourselves in need of a surgery or in a trauma that, thanks to our likelihood to bleed, would require the use of blood products.
Thus, I’d just like to put a face to the need. I’m one of the millions that is alive today thanks to blood donation.
Every day in our country 39,000 units of blood, on average, are used to treat cancer patients, transplant recipients or trauma injured patients. During certain times of the year, like the winter months or the holidays, blood banks find it especially hard to find enough donors.
We appreciate all of you who do your part to help us.
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As I wrote out and mailed my first COBRA payment – nearly the cost of my rent before I’ve made a single copay for a single doctor appointment or prescription – this was on the radio. I thought it was a great example of what state we’re in when it comes to health care. There were a number of good points made – among them, it isn’t just the uninsured that are suffering from the cost of health care. Listen to this, and then imagine the lives of many of the HPS’ers you know with extensive and chronic medical needs.
Check this out on today’s Talk of the Nation: http://www.npr.org/templates/story/story.php?storyId=99878438
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 For all those getting sick of the pics - sorry - I just love them. This one was a great way to study angle and line - and hey, my buddy Tommers is in the corner.
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