Living on the frontlines

I can’t believe that in just a few days I’ll be back at NIH for my 16-month follow-up visit in the clinical trial for pirfenidone to treat the pulmonary fibrosis of HPS. I’m happy to report I think this will be a very boring trip. When it comes to HPS and pulmonary fibrosis, I’m quite happy to be a very boring patient. Usually I start to get somewhat anxious a few weeks before time to go. The closer the trip gets, the more fixated I become on it. I start analyzing my breathing and probably become a huge hypochondriac. It’s a coping mechanism to steel myself against any bad news. This time, however, I’m more nervous that I might be jinxing the process. I feel great. My breathing has been terrific. Even my digestive issues have been much improved since about mid October. I’m really showing up with a few minor complaints – the skin infection that won’t go away, the sore by my stoma that hasn’t completely healed in a year, and the need to have a brief chat with Dr. Merideth about our futur...

After such a long time with barely any postings, I hate to post a grumpy post, but I’m feeling very, very grumpy right now thanks to Time Warner Cable. I am not a happy customer. As many of you know, I’ve been absent from the blogosphere because my “big” computer pretty much croaked. It’s been dying a slow death for about a year now, and although I’m typing on it currently, I know I still must buy a new computer soon. I plan to make the big purchase by Dec. 31 for tax reasons. In an effort to set something up at least temporarily, I tried to connect Ryan’s old laptop to the high speed modem. I installed the drivers etc and nothing worked. I called the cable company’s customer service line, and for days now have been told I could expect to wait more than an hour for a customer service representative. Well, I’ve had things to do and couldn’t wait more than hour. But, last night was a slow night. I was just watching TV, so I called and sat on hold while listening to the TV and working on ...

The HPS Network has received our first donation from Google donate on the Web site!!!! Actually, the donation was made in early December and for some reason there was a delay in Google reporting it to us – something we’re working on to improve. But, I’m so excited! Just a reminder, donations to the HPS Network are tax deductible as we are a 501c3 organization.

I’m in blogging withdraw! My computer that has been dying a slow and painful death for some time has finally breathed its last. I’ve been computer shopping, which for me is like trying to buy a car. In the meantime, the wireless connection I can occasionally get at home has been very weak. I no sooner get online and it dies out. Thus, I haven’t been blogging. So, a very merry yet late Christmas to everyone! I went to the Christmas Eve candle light service at my church and it was so beautiful. They turn off the lights at the end and just have the spotlight on the alter, the soloist and the Christmas tree. I wish they had left it that way throughout the service because it was so beautiful, even before the candles were lit. I sat behind a family that seemed to have a number of young cousins visiting and they were all having a ball playing the pews, crawling under the pews, peeking over the pew at me. And I was horrible because I only encouraged them, they were so cute. I looked at their d...

This is from the Kaiser Family Foundation. They have a Health Policy Report that comes out pretty regularly. Some of the numbers about what actually got approved were in here. If I weren't on deadline, I'd pull out just the stuff we're interested in - but I just can't do it right now. Sorry folks! But, for those who can't wait! Grin - Kaiser Daily Health Policy Report Kaiser Health Disparities Report: A Weekly Look At Race, Ethnicity And Health --> Capitol Hill Watch Congress Approves Fiscal Year 2008 Omnibus Budget Package; Bush Expected To Sign [Dec 20, 2007] The House on Wednesday voted 272-142 to approve a $555 billion omnibus budget package that includes the fiscal year 2008 Labor- HHS -Education appropriations bill and the 10 other unapproved FY 2008 appropriations bills, as well as $11.2 billion in emergency funds and $70 billion in additional funds for the wars in Iraq and Afghanistan, CQ Today reports (Clarke/Higa, CQ Today, 12/19). The Labor-HHS-Educati...

I want to update you all on what has happened with the NIH budget etc. but I'm a bit swamped right now. This article just ran in the San Jose Mercury News, however, and I thought it was excellent. I'll put the link at the end. The reality is we've got to help the general public understand why the NIH is so important. There's a place for people to leave comments at the end of the article on the newspaper's Web site. I'd urge you to click through and let at least this one news outlet know why the NIH's budget is so critical. Playing politics with medical funding By Myrl Weinberg Article Launched: 12/18/2007 01:35:38 AM PST At a time when many are questioning the federal government's expenditures, there is one agency that's completely worthy of appropriation - the National Institutes of Health. Right now, millions of Americans who suffer from various diseases are depending on President Bush and congressional lawmakers to stop their partisanship and fund...

The registration forms aren’t out yet. Not all the speakers are confirmed yet. But, for those that want to get a jump start on their plans for the 2008 HPS Network Family Conference, here’s a little information to help you get started. As I’ve blogged before, the dates of the conference had to be moved this year because the hotel is undergoing renovations. The conference will be March 28-30, 2008. The hotel room block is open if you want to go ahead and reserve your room. When the conference was in February, there weren’t a lot of groups just jumping up and down to meet in the cold of New York and the hotel has traditionally been able to be very flexible with us about rooms. In March, however, the demand for rooms is a bit greater. We had to sign a hotel contract that has something called an “attrition clause.” It’s pretty common practice, but it means that if we put, for example, 100 rooms in the room block, and our members only book 70 of them, then we’ve got to pay for the other 30 ...