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August 2007 - Posts
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 Here Dr. Markello is showing us this freezer full of nitrogen and "fresh" HPS blood samples. Earlier I'd asked Dr. Markello how it was they could use samples that were so old. I know that you can freeze things like this, but it still amazes me. He explained that they can take a blood sample out of here, thaw it out, and it's as if it had been sitting on the lab bench an hour.
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 This is one of the most special refrigerators in the world. This is the fridge that houses more than 10,000 blood samples from HPS patients going back 15 years. Dr. Markello is pulling out one of the trays to show us. Each one has more than a 100 little test tubes in it. The fridge is quite deep and there are several layers of samples.
Just imagine, there are samples in there from HPS'ers that might not even be with us any more, but they're still helping research. It just goes to show how valuable each person is to the effort, and what a team effort is required.
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 This photo gives you a little better idea of what the place actually looks like. There are several of these little "areas" all in a row. (If I'd have only know we'd be taking more pictures, I would have put something else on - groan!)
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 Over the years I've been asked, probably a few hundred times, if I'd ever seen Dr. Gahl's lab. The answer was no. To be honest for some unknown reason I was dying to see it, but I never had the nerve to ask. I never, ever, wanted to be a pest, a bother, or take up a lot of time.
But on this most recent trip the opportunity came to make a quick visit, and Debbie and I couldn't turn it down. It was, in fact, the highlight of our trip. Grin!
Personally, I think it's kind of funny that so many of us have a curiosity about this place. I can't explain it. Perhaps it just makes us feel better to visualize it and know it's really there - HA!
So, I'm going to post a few pics. A big thanks to Dr. Merideth for taking us, and for taking the pictures.
This first picture is of Dr. Markello, me, Debbie and Angelina, who is one of the researchers. She is also from Puerto Rico!
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As the saying goes, the third time is the charm. I've started blogging twice since arriving at NIH, but to be honest, I was just too tired to finish. Last night I started getting phone calls from some of you worried that perhaps I'd had some bad news.
I'm happy to report that so far, all the test results are good news! I've just had a trouble time sleeping here, and thus went three days with about an hour of sleep a night. When I'm too tired to blog, you know I'm dog tired!
Okay, so, let's get to the point. How are the lungs?
Yesterday I had an abbreviated wrap up session with Kevin for the cameras. Thus, I still don't have all my test results. But, I do know that the preliminary pulmonary function test report was back. I couldn't be happier.
When I entered the trial my forced vital capacity (FVC) was 82 percent of predicted. It went above 90 on the four-month and the eight-month follow ups. And yesterday, it was 94 percent of predicted, well into the normal range, and 12 percent better than a year ago. They always tell us that it isn't one test report that matters, it's the trend. Well, this is a trend I can live with - literally.
We also looked at my CT scans with the camera crew. There was fibrosis on the scans, but it's minimal, and it's stable. Yes, there was a tad more than a year ago, but so minor the docs didn't think it was significant. They're saying the fibrosis is stable.
So, I'm thrilled.
Nicole, the film producer, asked me how I felt about these results. I told her I was elated - but I worry that I didn't convey just how elated I was. I was so tired, I felt like a bit of a robot. Elated doesn't even begin to discribe it.
In the interest of full disclosure, I do want to note that just because my reults are good doesn't mean that I am on the drug. It is possible that I'm on placebo and somehow have made these gains on my own. The entrance criteria of below 85 percent of predicted was selected because it's a point at which gains typically aren't huge and don't last. So, it might not be likely, but it isn't impossible and I do want to point that out.
For me personally though, as long as I'm doing well, I guess it really doesn't matter.
More later on the other test results.
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I'm here!
Although the morning at home was a bit bumpy, the trip went well. I should be dead tired, but I think the overall excitement of the day has me all stirred up.
I think I may have to start asking for help with the airlines, however, which has me a bit bummed. It isn't really a vision thing. It's more an issue that traveling with all this medical "crap" is getting more complicated.
TSA informed me today that the rules have changed for traveling with a CPAP machine. They don't just have to take it and test it now, but you have to remove it from the bag.
So, there I was in airport security trying to take off my shoes, take out my laptop, take out my camera and now take out my CPAP with all of its cords and hoses - even though there was no line it took me a half hour to get through security. I was exhausted by the end of all that. And, not being able to see well, I felt uncomfortable having my belongings, expensive belongings, strewn from here to there as they were inspected.
The film folks met me at the airport and filmed Hector, the cab driver, helping me get my bags etc.
Hector is a great guy.
One of the challenges to recruiting for our drug trial is that so many of the patients must come from Puerto Rico. Not everyone has great orientation and mobility skills. Many HPS'ers haven't traveled a lot. So, coming to a huge airport in Washington D.C. and trying to figure out how to get to the NIH when you can't see well and don't speak the language can be very scary.
Thus, the NIH contracted with Hector the cab driver. Hector is from Columbia and speaks Spanish. The NIH has worked it out with the airport to allow Hector special permission to meet patients at the gate. He helps you find your luggage, drives you to the front door of the hospital, and even walks you to admissions. It makes the travel experience much less stressful, and that makes patients more willing to participate.
I was very touched because as they interviewed me in the taxi, Hector chimed in with some of the difficulties he's observed among the HPS patients. Hector knows what's going on. I was also so touched because at one point he said something to the effect of, "I feel so honored to be able to help. I feel like I'm on the team to help cure HPS." And he's right. He's a key member of our team.
When you think of key players in a drug trial, you might think of our brilliant researchers, of the nurses that care for us - but you might not think of the cab driver. But for us, the relationship Hector is building with patients helps them to feel safe and comfortable about coming back. I was so glad they got that on camera - I hope it comes out okay.
So, now I'm safely in my room with Debbie, another HPS'er I've known for some time. Debbie is such a riot! This evening she was talking with her family back home and she says, "What, do you think my initials are G.O.D? Take care of it yourself....." I busted out laughing!
So, the usual disclaimer here about my NIH blogs - this is an e-terminal at our bedside - and it doesn't have all of my adaptive tech stuff on it. I might make a lot of spelling and typing boo boos because it's hard to see.
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My cab should arrive in about a half hour. I’m a nervous wreck. I don’t get nervous about traveling, but I do get nervous about whether I’ve remembered everything I’m going to need, what will happen during the trip etc.
I’ve been up most of the night. I had to finish several stories for work, although I’m not sure how great they were. My publisher might read them and think I’ve gone around the bend. To say I was a bit distracted by my trip would be an understatement. I also had to get the newsletter posted to the printer’s Web site so it could be printed while I’m away.
The good news is we seem to have found a good deal on printing the newsletter. But, I’m a little nervous about the newsletter its self. First off, I had to cut some stories I really wanted to run because we had to keep the page count down to 12 for budget reasons. We had so much news about science and the various research protocols and the conference that I couldn’t run as many stories about HPS’ers as I would have liked.
I’m also nervous that there’s some big glaring spelling mistake that I haven’t noticed because I’ve looked at the thing for so long. I did have four people proofread this time, but still, as I was sending it to the printer last night I found two more booboos! Just for the record, I may work as an “editor” but my talents are not in “copyediting.” I’m great at content, developing story ideas, working with writers etc. but I’m certainly not a grammar god. (Just in case you haven’t noticed from reading this blog!)
When I finally got to bed last night, about 1:00 am, I couldn’t sleep. I went ahead and packed up my CPAP so I wouldn’t have that to do in the morning, so I have a feeling every time I started to fall asleep, I was probably having an apnea event. Then, about 3:20 am, I heard what sounded like gunfire! There were two loud bangs together, then a pause, then two more loud bangs. I shot out of bed, made sure all my doors were tightly locked, and then I sat on my couch trying to decide if I’d dreamed this, if it was a fire cracker, or should I call 911?? I don’t know what I could have told them. I wasn’t even sure where the sound came from, only that it woke me up. As I contemplated, I heard sirens. I can’t see the street from my windows, but I guess someone else was more on the ball than I was. I have no idea what it was, or if it was indeed shots. There was nothing about it on the news this morning.
But, needless to say, then I really couldn’t sleep.
This morning I’ve been running around doing last-minute things for the trip.
The film folks are meeting me at the airport. Despite the fact I got up this morning and actually styled and set my hair, it already looks a mess. It’s so hot here!
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I need a break from my feature story, so thought I’d blog briefly about my doctor’s appointment on Wednesday. It was a mixed bag, and to be honest, I’m a bit confused. So, please take all of this with a grain of salt as I have a feeling I really don’t understand this yet.
Regular readers will remember that right before my last NIH trip I started breaking out in hives, and that while I was at NIH, they got pretty bad. It was only one of several weird things to happen on that trip. Kevin gave me some medication that controlled the hives well, but knocked me on my butt! And, after about a month it seemed to me that the medication wasn’t just making me tired, it seemed to be affecting my memory. I was making really stupid mistakes at work etc.
So, I went to see a local allergist/immunologist at KUMed and he put me on a pill form of Albuderol, Allegra and Hydroxychloroquine. I’d been on Allergra before, and it never seemed to do much for me. But, it seems to be working well.
As part of my participation in the trial, I report all of the drugs I’m taking to the NIH. There are some drugs you can’t be on and still be on the trial, thus I also want to make sure I’m not somehow breaking the rules and causing a problem with the data. Kevin had some concern about the Hydroxychloroquine, but said that I could take it for a few months and we’d see what happened.
It seems that Hydroxychloroquine dampens down the immune system, and my local doc thought that my hives were the result of an autoimmune issue. I didn’t quite understand all of this at the time. As I said, the drugs were making me a little foggy in the head, so I wasn’t my normal note taking self. That’s probably why NIH expressed some reservations about it.
Back in June the doctor did some blood work, but what I hadn’t realized until my appointment on Wednesday was that the blood work came back abnormal. He did a functional anti-FceR test. Apparently, from what I’ve been reading online, a normal score is anything below 10. I scored a 51. So, he thinks the hives are autoimmune related.
When I was at NIH, Kevin worked me up for all sorts of autoimmune stuff and everything came back normal. I do remember him saying one test was high, but that since I had hives, he expected it would be. I don’t know if that was the same test.
I asked the local doctor what he thought the long-term plan should be with the Hydroxychloroquine. I explained I was concerned that if I didn’t get off of it, it would be a problem for the trial. I explained it was time for me to go back to NIH, and I planned on discussing this with the team there. I wanted to know what he was thinking. He said I could go ahead and stop taking it and just see what happens.
He also threw out the term urticarial vasticulitis (sp?) – so I’ve been reading up on that. Interestingly, many of the symptoms are very HPSish. So, is there a link, or is he sticking that particular label on the problem because I’m having similar issues, even if they are HPS issues? And, most importantly, what does this mean for the trial???
Is all this just a really complicated way of saying something that isn’t a big deal? Or is it something I should really be worried about?
I left his office and went to see Annette. The social worker was there, and Annette asked me to stay while they worked out issues of child guardianship etc.
And then we had an HPS board meeting that night. So, I never really got to sit down and think this through until the next day. Now I’ve got a ton of questions, but I have a feeling NIH will be more patient about answering them, so I’m waiting for next week.
One of my fears is developing some other medical issue that would kick me out of the trial. What would I do about my pulmonary fibrosis then?
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I am dead tired. It’s been a long week.
Yesterday I was worried that I wasn’t going to get everything finished that needed to be finished by the time I had to leave for NIH. My computer has been acting up again, and while I love my laptop, I’ve discovered it’s not ideal for marathon computer sessions (something that has me rethinking my new computer purchase strategy.)
So, I stayed at work to try to finish up some things until 10:00 pm Thursday night. Today I felt like I was in the last leg of an endurance race. I’m so tired, and yet there is so much to do. I had to be sure I made some decisions about what we’re going to cover in the October issue so that our editorial assistant would have something to work on while I’m away. At the same time, since we’re down on staff, we’re trying to get some of the stories finished early to allow for extra glitches in layout and production. We’re using freelancers to help edit, and they work for other people besides just us – a fact I’m especially sensitive to since I’ve been a freelancer for years. That means I have to finish my feature before I leave Monday.
I did start it – sort of. Keeping up with training the new assistant, finding news stories when it’s been a slow news week, taking all the PR phone calls, and going to the bathroom nine times a day – some days I feel like I do nothing but spin my wheels.
I started off the morning by meeting with our publisher. I typed up a list of everything our assistant was supposed to be working on next week. I went through my list of projects for the next two issues and the status of each one. We went over how things are supposed to be handled next week, who is supposed to do what, who needs to be checked up on etc.
These are the sort of things I normally work with our editor-in-chief on, and she knows the NIH drill. I always tell her that we should plan as though I will have no e-mail or phone access. My last two NIH trips didn’t really go as planned. When I went around Christmas time, I’d been sick for a few weeks beforehand with strep, a sinus infection, and showed up at NIH with a nasty cough. This meant extra tests – and frankly, what I really needed was some rest. I was completely worn out.
On the spring trip I was having hives and sudden, horrible lower back pain. Again, a totally unexpected development that called for a bunch of extra tests as well as medication that made me pretty loopy. It wasn’t exactly on the schedule. If I’d planned to work from NIH, I wouldn’t have been able to do it.
The other glitch is technology.
The inpatient beds at NIH each have a TV that has internet access. The trouble is there’s no adaptive technology on the machine and it can be very hard to read e-mail etc. for any length of time because of eye fatigue. I’ve also have trouble on every trip being able to connect to the server at work. I think it may be a firewall issue – but patient internet access isn’t exactly top on the list for the IT department. It’s understandable. I’d rather all the other computers in the hospital be working properly!
Lastly, lets face it. NIH trips always have an element of nerves associated with them. When I’m stressed out about waiting for test results, or if I should get bad news, I don’t want to have to be on the phone with work while someone blows a casket over some photo or something.
So, I tried to explain all of this to our publisher. She seemed to understand and be very respectful of all the issues.
After our meeting I went to do a news brief for the day, and couldn’t find a decent story to save my life. It’s seldom so slow! What should have taken an hour suddenly was taking hours, and I had other things to do. I could almost feel my blood pressure rising like steam building in a teapot. The clock was ticking.
Then about 2:30 pm I felt that dreaded itch.
Sure enough, I was leaking.
Worse, although my bowels have been much better this week, I was having the runs – ostomy output the consistency of water. I wanted to just burst into tears. How could I leave with some vague health explanation when we were so under the gun? I finally had to confess my ostomy to my boss this year, but I don’t know if she told her boss about it? Even worse, it was too late for a cab – by the time one would arrive there would be pooh everywhere.
There are no private restrooms at work. It makes changing an ostomy at work very difficult. At one stage I was contemplating asking my company to fully enclose the handicapped stall in the restroom so that I wouldn’t have to go home every time I had an ostomy crisis. But, I never did it because of other changes afoot at work.
So, what was I to do now?
As the saying goes, necessity is the mother of invention. I did have an extra pouch and supplies in my desk drawer.
Changing my ostomy without getting blood or pooh on my clothes pretty much means getting almost naked. How can you get naked in a public restroom and have access to the sink for water to clean the skin?
Luckily I still had my ice tea cup from the morning. I stuffed my supplies into my purse and went to the kitchen and quickly cleaned out the cup. I filled it with water and headed for the bathroom.
I looked under all the stalls and the bathroom was empty. But, there was no way to lock the main door. I grabbed a huge wad of paper towels and headed for the handicapped stall.
You know how in bathrooms there’s a pretty wide crack between the stall door and the petition its self? I have no idea how much a sighted person can actually see through this crack. I was afraid to get undressed from the bottom down for fear someone would be able to see just enough through the door. Can you imagine the office rumors that would result?
I had taken my large tote bag with me and I hung it on the door hook and tried to position it over the crack. I then took the paper towels and draped them over the handicapped rails of the stall. I hung the grocery bag that I kept the extra supplies in over the back of the toilet so that I could put my trash in it. Then I carefully balanced the cup of water on the toilet seat, which was a major feat of physics because the toilet seat isn’t flat – it slopes down.
I took some of the paper towels, pulled my pants down only part way, and stuffed the towels in my pants in sort of a draping fashion to try to protect my pants from any blood or projectile pooh.
Then I started trying to change the appliance.
Wouldn’t you know that pesky sore on the underneath of my stoma is back and it’s bleeding and by the way, it’s sore! I’m carefully trying to grab paper towels to hold on it, as well as to put over the stoma so that the diarrhea I’m having doesn’t go everywhere. And, I’m trying to carefully dip some of the towels in the water and clean the skin around my stoma. All the while I’m trying to be careful so as not to spill the water or drop the towels off of the rails, and thus have to bend over and pick them up!
I couldn’t seem to get everything to calm down enough to replace the appliance. There’s no air conditioning in the restroom, so I’m getting hot and the sweat is starting to run down me – a development that isn’t going to help make the pouch stick. I am so ready to cry at this point.
And then in walks the janitor!
I could hear her changing out the paper towels and the soap dispensers and I wondered if she could see anything through the cracks, or if she had any idea there was something strange afoot in the handicapped stall.
Oh well – nothing could be done about it now if she was at all aware – so I kept working on my little project. Eventually I got a new pouch on, cleaned up and went back to my desk.
I spent the whole afternoon waiting for another leak. I was afraid the sore would keep bleeding. I knew the skin area wasn’t really adequately cleaned.
My stress level, as I started back into my work, was now through the roof. I’m tired. I’m cranky. Now I’m sore. And I’m behind.
I now have an hour before I have to catch the bus home, and my phone rings. It’s my publisher.
She’s having second thoughts about the topic I had assigned for one of our departments. The assignment had gone out to the writer two weeks ago. Not only had I discussed the topic with my boss before she left, but the writer has already started doing interviews. And, I have an hour left? What am I supposed to do – rewrite the assignment letter? You’ve got to be kidding me.
She actually didn’t want me to redo the letter. She just wanted to think through the Nov/Dec assignment a bit differently. Thus in this very thoughtful way (which makes total sense) she wanted to discuss the issue, look over the options etc.
I’m worried I sounded very abrupt. She, of course, had no idea what had been transpiring the bathroom on top of everything else I had going before I could leave. How exactly do you explain this to some unsuspecting soul?
And then I just started laughing. What else are you going to do?
I have a feeling that at some point next week I’m going to be asked how being in the drug trial affects my life. Hmmmm…..how about sweating like a pig in a public restroom, half naked as your bleeding and pooping everywhere all in an effort to not have to leave work early so you can get everything finished and be in the hospital for a week?
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First, let me apologise for not blogging more this week. I actually have a lot to say, but am very crunched for time. My boss had her baby on Monday, a little girl of six pounds and 18 inches long. She sounds small, but her mom is tiny. If she’s been any bigger I would have been worried! Grin!
This means that at work it’s just me, our publisher, and our editorial assistant. I’m swamped. I’m going to be at NIH next week, so not only am I doing two jobs, but I’m going to be out a week. And, I ended up spending the better part of yesterday at KUMed for my immunologist appointment. I also finally got to visit Annette.
So, here are just a few updates and teasers…
1. Thanks to everyone for praying for Annette. It means a lot to her. They’ve revised her diagnosis – they now believe she’s probably had leukemia for several months and that indeed there’s probably a genetic link. They believe that instead of AML that she actually has ALL, which involves the lymph nodes. They’ve told her that the bad part of ALL is that it often travels to the brain and causes brain cancer. But, the good news is all the tests they’ve done show no cancer in her brain. She’s started chemo and today they’re putting some kind of port (sorry, didn’t totally catch this part yesterday – I was a little shell shocked) in her chest as well as in her head. They’re going to give some type of chemo drugs right into her head to be sure the cancer doesn’t spread to her brain. They told her that if the cancer doesn’t spread to her brain, they give her a 90 percent chance of being “cured.” But, if the cancer does move to her brain, the odds go down quite a bit. We had a bit of an emotional night.
I think so much has happened in the past week that there hasn’t been time for everything to sink in yet. I’m really hoping I can go see her before I have to leave for NIH.
2. There was a front-page story about HPS in one of the newspapers in Puerto Rico today. The Puerto Rican HPS Family Conference is coming up – so I’ll blog a little about that when I get a chance. I’ll post the story, but Lord knows I can’t read it! Carmen had to translate it for me.
3. I’m very excited as a sports celebrity has shown an interest in helping out the HPS Network! I need to pull together a few things, and then I’ll blog all about it soon.
4. Several of my friends have gotten blog fever in the last two weeks. I am going to add your blogs to the blogroll! I just haven’t had time yet! But, they’re coming!
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I know that many of you must be sick of hearing about GINA – but folks, we’re almost there! The House of Representatives has passed this bill. An overwhelming majority of Senators have said they’ll support the bill. Now they need to step up and do it. Please write your Senators today and ask them to not only support GINA – the Genetic Information Non Discrimination Act – but demand that it brought to a vote!
Help GINA progress through the SenateTell the Senate to take action on GINA!
The Genetic Information Nondiscrimination Act, or GINA, (S.358) is on the verge of passing, after 12 long years! The House bill (H.R.493) passed 420-3 on April 25 and the Senate bill has been reported out of committee. We just need the full Senate to vote on the bill to get it to the President’s desk!
Tell your senators to push for GINA to come to the floor for a vote! A list of senators and their contact information is below. Please take a few minutes to tailor the sample letter below on your letterhead and fax it to the Senate. Feel free to insert personal reasons for your support of the bill into the text.
There is power in numbers! Tell your friends, family, coworkers, and other members of your organization to take action now. We must make a big impact on this issue, and if every senator is contacted multiple times, we can make it happen!
Sample Letter
Dear Senator ____,
I support the Genetic Information Nondiscrimination Act, or GINA, (S.358). I am writing to ask for your support for this legislation to come to the floor and pass.
It is astounding that this bill, which the Senate has passed unanimously in the 108th and 109th Congresses, has not passed in the 110th yet. The House passed it 420-3 on April 25, 2007. This bill protects all Americans from the misuse of genetic information in employment and health insurance decisions. With these protections in place, Americans will be able to use genetics in medicine without fear of misuse of their genetic information.
More than 140 national patient groups, academic institutions, research centers, companies, women’s organizations, labor organizations, and the millions of Americans endorse this legislation. We represent every sector of society in this nation, and we urge passage of GINA.
Thank you for your time.
Best,___
List of Senators
Senator
Phone
Fax
Daniel Akaka (D-HI)
202.224.6361
202.224.2126
Lamar Alexander (R-TN)
202.224.4944
202.228.3398
Wayne Allard (R-CO)
202.224.5941
202.224.6471
Max Baucus (D-MT)
202.224.2651
202.224.0515
Evan Bayh (D-IN)
202.224.5623
202.228.1377
Robert Bennett (R-UT)
202.224.5444
202.228.1168
Joseph Biden (D-DE)
202.224.5042
202.224.0139
Jeff Bingaman (D-NM)
202.224.5521
202.224.2852
Christopher Bond (R-MO)
202.224.5721
202.224.8149
Barbara Boxer (D-CA)
202.224.3553
202.956.6701
Sherrod Brown (D-OH)
202.224.2315
202.228.6321
Sam Brownback (R-KS)
202.224.6521
202.228.1265
Jim Bunning (R-KY)
202.224.4343
202.228.1373
Richard Burr (R-NC)
202.224.3154
202.228.2981
Robert Byrd (D-WV)
202.224.3954
202.228.0002
Maria Cantwell (D-WA)
202.224.3441
202.228.0514
Benjamin Cardin (D-MD)
202.224.4524
202.224.1651
Thomas Carper (D-DE)
202.224.2441
202.228.2190
Robert Casey (D-PA)
202.224.6324
202.228.0604
Saxby Chambliss (R-GA)
202.224.3521
202.224.0103
Hillary Rodham Clinton (D-NY)
202.224.4451
202.228.0282
Tom Coburn (R-OK)
202.224.5754
202.224.6008
Thad Cochran (R-MS)
202.224.5054
202.224.9450
Norm Coleman (R-MN)
202.224.5641
202.224.1152
Susan Collins (R-ME)
202.224.2523
202.224.2693
Kent Conrad (D-ND)
202.224.2043
202.224.7776
Bob Corker (R-TN)
202.224.3344
202.228.0566
John Cornyn (R-TX)
202.224.2934
202.228.2856
Larry Craig (R-ID)
202.224.2752
202.228.1067
Mike Crapo (R-ID)
202.224.6142
202.228.1375
Jim DeMint (R-SC)
202.224.6121
202.228.5143
Christopher Dodd (D-CT)
202.224.2823
202.224.1083
Elizabeth Dole (R-NC)
202.224.6342
202.224.1100
Pete Domenici (R-NM)
202.224.6621
202.228.3261
Byron Dorgan (D-ND)
202.224.2551
202.224.1193
Richard Durbin (D-IL)
202.224.2152
202.228.0400
John Ensign (R-NV)
202.224.6244
202.228.2193
Michael Enzi (R-WY)
202.224.3424
202.228.0359
Russ Feingold (D-WI)
202.224.5323
202.224.2725
Dianne Feinstein (D-CA)
202.224.3841
202.228.3954
Lindsey Graham (R-SC)
202.224.5972
202.224.3808
Charles Grassley (R-IA)
202.224.3744
202.224.6020
Judd Gregg (R-NH)
202.224.3324
202.224.4952
Chuck Hagel (R-NE)
202.224.4224
202.224.5213
Tom Harkin (D-IA)
202.224.3254
202.224.9369
Orrin Hatch (R-UT)
202.224.5251
202.224.6331
Kay Bailey Hutchison (R-TX)
202.224.5922
202.224.0776
James Inhofe (R-OK)
202.224.4721
202.228.0380
Daniel Inouye (D-HI)
202.224.3934
202.224.6747
Johnny Isakson (R-GA)
202.224.3643
202.228.0724
Tim Johnson (D-SD)
202.224.5842
202.228.5765
Edward Kennedy (D-MA)
202.224.4543
202.224.2417
John Kerry (D-MA)
202.224.2742
202.224.8525
Amy Klobuchar (D-MN)
202.224.3244
202.228.2186
Herbert Kohl (D-WI)
202.224.5653
202.224.9787
Jon Kyl (R-AZ)
202.224.4521
202.224.2207
Mary Landrieu (D-LA)
202.224.5824
202.224.9735
Frank Lautenberg (D-NJ)
202.224.3224
202.228.4054
Patrick Leahy (D-VT)
202.224.4242
202.224.3479
Carl Levin (D-MI)
202.224.6221
202.224.1388
Joseph Lieberman (D-CT)
202.224.4041
202.224.9750
Blanche Lincoln (D-AR)
202.224.4843
202.228.1371
Trent Lott (R-MS)
202.224.6253
202.224.2262
Richard Lugar (R-IN)
202.224.4814
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Mel Martinez (R-FL)
202.224.3041
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John McCain (R-AZ)
202.224.2235
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Claire McCaskill (D-MO)
202.224.6154
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Mitch McConnell (R-KY)
202.224.2541
202.224.2499
Robert Menendez (D-NJ)
202.224.4744
202.228.2197
Barbara Mikulski (D-MD)
202.224.4654
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Lisa Murkowski (R-AK)
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Patty Murray (D-WA)
202.224.2621
202.224.0238
Ben Nelson (D-NE)
202.224.6551
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Bill Nelson (D-FL)
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Barack Obama (D-IL)
202.224.2854
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Mark Pryor (D-AR)
202.224.2353
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Jack Reed (D-RI)
202.224.4642
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Harry Reid (D-NV)
202.224.3542
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Pat Roberts (R-KS)
202.224.4774
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John Rockefeller (D-WV)
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Ken Salazar (D-CO)
202.224.5852
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Bernard Sanders (I-VT)
202.224.5141
202.228.0776
Charles Schumer (D-NY)
202.224.6542
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Jeff Sessions (R-AL)
202.224.4124
202.224.3149
Richard Shelby (R-AL)
202.224.5744
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Gordon Smith (R-OR)
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Olympia Snowe (R-ME)
202.224.5344
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Arlen Specter (R-PA)
202.224.4254
202.228.1229
Debbie Stabenow (D-MI)
202.224.4822
202.228.0325
Ted Stevens (R-AK)
202.224.3004
202.224.2354
John Sununu (R-NH)
202.224.2841
202.228.4131
Jon Tester (D-MT)
202.224.2644
202.224.8594
Craig Thomas (R-WY)
202.224.6441
202.224.1724
John Thune (R-SD)
202.224.2321
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David Vitter (R-LA)
202.224.4623
202.228.5061
George Voinovich (R-OH)
202.224.3353
202.228.1382
John Warner (R-VA)
202.224.2023
202.224.6295
Jim Webb (D-VA)
202.224.4024
202.228.6363
Sheldon Whitehouse (D-RI)
202.224.2921
202.228.6362
Ron Wyden (D-OR)
202.224.5244
202.228.2717
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I’m just sitting here waiting on a phone call and thought I’d post a brief health update. I’m happy to report not much is happening on the GI front. I had a little trouble yesterday afternoon, but I sort of asked for it. I ate Mexican food for dinner. And, it was worth a little misery – yummy.
In fact, now that I’m feeling better, my appetite is back. Boy is it back – can I keep the happy intestines, but send the appetite back? After a few weeks of not even being able to eat the minimum weight watchers points in a day, now I want to eat EVERYTHING! I feel hungry CONSTANTLY! This is just so unfair. If, after all that GI misery, I actually managed to lose a pound or two, at this rate I’m going to gain it back just in time for NIH. Perfect. Just perfect!
Yesterday and Sunday I completely blew my allotted points – and frankly, not blowing the bank by 20 or 30 points was a major achievement of will power.
I told Kevin I didn’t mind sharing everything with the film folks except one thing – when he gives me the fat lecture, we can just keep that one to ourselves. If that ever made it to public airing, my family would never let me hear the end of it.
It’s bad enough that there will be film footage of my big butt out there!
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Today I’m feeling much better about Annette’s situation. Not that things aren’t very serious, but I’m really pleased with the care she’s getting at KUMed. I think she is as well. The doctors are telling her she has the AML type of leukemia, but that they think they’ve caught it early and they think it’s confined to the bone marrow.
She’s been scanned and gone over every which way these past few days as the doctors check to make sure there isn’t any other cancer anywhere. So far every test has come back clean. They’ve also been completely checking out every organ system before they start Annette on chemotherapy. Everyone seems very upbeat about her long term prognosis, although it’s going to be a tough year ahead.
The kids will be going to Nebraska to stay with their grandparents and will be enrolled in school there for now. They are telling Annette that even when she gets out of the hospital in about six weeks, she won’t be up to caring for two small children – not to mention the bugs and germs kids bring home from daycare and school. That’s going to be really hard on her. When I spoke to her today that was the one thing she got emotional about.
I was also very interested to hear that the docs at KU are convinced she never had Lupus or COPD – I’m not sure, however, what they think has been going on though. I was interested to hear they’d been in asking a lot of family history questions so sounds like they were looking at the role of genetics – but there isn’t anyone else in the family with the same issues.
At any rate, it sounds like they’re on top of things. They’ve also been talking to Annette about how to talk to the kids about what’s going on, which I was very happy about.
I haven’t yet been able to see her, but I have an immunologist and allergist appointment at KUMed on Wednesday – so when I’m finished I’m hoping to be able to visit.
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I’ve got a prayer request, and for a change it isn’t for an HPS’er. Annette, the mom of my Godkids, was diagnosed with Leukemia on Thursday. She’s been sent from the small hospital where she was admitted to the University of Kansas Medical Center (my hospital) and will probably be there for several weeks at least.
Annette hasn’t been very well for some time. There’s a saying I’m told gets mentioned in medical school – if you hear hooves, don’t assume it’s a horse. It might be a zebra. Maybe it’s because I live in the land of the zebras, but something seems odd about this. Lord knows I know nothing about Leukemia etc. – but Annette has been collecting various diagnoses for years. She’s had Chronic Fatigue Syndrome and Fibromyalgia for years. She’s also had all sorts of digestive issues over the years. About the time I was diagnosed with HPS (the second time) she was diagnosed with Chronic Obstructive Pulmonary Disease. She’s been on oxygen on and off for the last year. Then, this year she was told she had Lupus. The weird thing about the Lupus is that she’s tested positive for it, then another doc. will tell her she’s negative etc. The opinion seems to vary from doctor to doctor. And now this – does lightening really strike several times in the same place? Annette and I are the same age, 34.
The Lupus diagnosis had seemed like a good fit with all her other symptoms – I wonder if there’s anything about Lupus that would make someone more likely to develop Leukemia? Maybe some medication she’s been on or something? Or if she’s gone misdiagnosed for some time? Or if all these events are just independent events and good old Annette just has really bad luck.
Really, this is out of my league. I’ve been reading up on Leukemia as the family doesn’t have internet access and isn’t likely to do that sort of research. Just for grins I did a Google scholar search for Leukemia and Lupus, but all I found were antidotal stories. I didn’t get a chance to dig very deep though. I’ve been helping out with a few things here and there and had the kids for a bit today.
I know my hunch is probably a nutty hunch from the land of the zebras based on the fact that I’m not a doc. and know pretty much nothing – but if anyone out there knows more about this than I do, or can even make some suggestions about what we should be asking Annette’s doctors – I’d really appreciate it.
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I know there are several folks out there praying for me, and I must say, today I’m in a much better mood. I’m still frustrated with many things going on right now, irritated, perturbed etc. – but at least I don’t have the overwhelming desire to bite someone’s head off today. Grin! Sleep really does help.
In the midst of my little crank fest during the last two days, I found an interesting article in the New York Times called Thriving After Life’s Bum Rap. It’s the sort of article that you could read in a good mood and feel all gushy about, or read it in a bad mood and want to throw things.
When I first read it I was in crank fest mode, and boy, if I’d had the energy to blog, you all would have had an eye full! I ranted in my head and went from a horrible mood to a down right you-know-what mood. Today, rereading the article, my response is somewhat more tempered.
The article is about cancer survivors who were able to turn their experiences of being super sick, of dealing with a life-threatening illness into a positive. They’ve come through their experiences with this whole new appreciation for life. They cut back on work, spend more time with family, do more of the things they love, become more involved in their communities etc.
At the height of my frustration the last few days, I must confess my first response was something along the lines of, well gee, isn’t that just hunky dory for them. It must be nice. As I said, I was cranky. I wasn’t in the mood for some sort of Polyanna approach to life being unfair.
The thing is I think that for many of us (facing life limiting illness) the article’s points are true. You become so grateful for silly little things like, for example, being able to eat a normal meal. You can’t go through this experience and be unchanged by it. You get to decide if it’s changed for the better, or for the worse.
At the same time, there’s this Lifetime family movie sort of idea about what it’s like to deal with scary illness that can in some ways be harmful too. It’s a lot to live up to when you’re struggling. We can’t all be as lucky as those that suddenly can work less, spend more time with friends and family etc. And when we fail to be able to act on this newfound wisdom of ours, it’s quite the guilt trip.
For me, one the cruel truths about my Hermansky-Pudlak Syndrome and pulmonary fibrosis is that I know how I want to spend my time here on Earth, but the realities of life don’t somehow melt away just because some doc has written a crappy diagnosis in your medical record. You’re forced to straddle the worlds of HPS, chronic illness etc. and the “normal” world and you’re expected to maneuver both in some sort of flawless ballet.
Lately, my problem is no one ever taught me the steps and I’m doing a bad job of faking it. I’m working more, not less. I see less of my friends, not more. Trying to be an HPS expert, both for my own medical care as well as for advocacy, takes a heck of a lot of time. Trying to keep research moving forward is yet another full-time job. Who are these people that suddenly get sick and have all this time to spend on their own personal happiness?
At the same time, I’m in this fix partly because of choices I’ve made – and I wouldn’t change those choices. I never would have chosen to have HPS, but since I do, I find it incredibly meaningful to be able to help work toward the cure. It’s very hard sometimes. It’s very sad sometimes. But, I treasure my HPS friends – people I would have never met had it not been for HPS – like members of my family. Life might be a lot easier if I was just juggling my own health issues and my own life issues – but it wouldn’t be as meaningful. So, I guess I shouldn’t gripe.
Usually I am, in fact, happier than I’ve been lately. I suppose part of my trouble is I actually (and this might be hard for blog readers to believe) don’t like to gripe. There is a point beyond which it really isn’t beneficial to whine. At some stage, you’ve got to move beyond venting to finding solutions. I’ve been a little stuck on the solutions lately, and I don’t like it.
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