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June 15, 2006

Memorial Programme

Hi everyone,

We'd like to share some of the memorial pieces that were shared during Greg's services last weekend.

Greg's Memorial Program

Dr. Paul Meyerson
Snooze's close online friend

Most of you have no idea what a MUD is, but if you are to understand how greg lived online, it's an important point. Imagine you are IM'ing (instant message) someone. Now, imagine that you can IM several people at once--you have a chat room. A place where people can congragate. But add characters and rooms and descriptions of those rooms and you have an online town or village. And in that arena, people spend time together. Talking, joking, just being together. This is how I spent time with greg for almost 10 years.

Some people would say that there's a big difference between knowing people online like this--never being there in the same room, or on the phone. But talk to someone, in any way, an hour or two a day, for 5 or 6 years, and any difference there might have been no longer exists. You know the person on a deep and connected level. I spoke to Greg every day, at least for a short while, many times for hours. But not continuously, usually. Talking on MUDs are generally a disconnected series of sentences, fragments of conversations.

I once commented "this is so odd. I say something. You answer me 3 hours later." His response, which made me crack up at the time was a simple shrug, saying "It's the mudder way."

That was perfect for him. No one in your face. No one demanding anything. The mudder way.

I'd come back home from work to a couple of different, but typical greg actions:

Gregory run in circles (if he was feeling pent up)
or
Gregory stomps around (usually if Dale decided to switch the TiVo to something else...)
or just
Gregory bored (which happened a lot since counting himself among the unemployed)

So he turned his attention to his computer and his friends. He must have been on 20 MUDs, and he'd often be on all of them at once, switching between them and keeping 20 conversations going (although often none of them well...greg had an attention span that would make my 5 year old jealous)

One of the good things about being on the MUD was that he could be pretty open with feelings--things that are hard to say in real life. I remember clearly this one story, which I mentioned to Eleanor, about 6 years ago. He told me that he had gotten a call late that night that he was the alternate for a new lung and completely freaked out. He jumped online looking for me but I wasn't around and at the time he didn't have my number. So he ran in circles for awhile before calling the hospital and telling them no, and to take them off the wait list. I remember giving him the what for and nearly screaming at him (as much as you can in a text-only format) that he was an idiot and he needs to get back on that list, blah blah blah. He was so nervous and just nodded at me. Eventually, though, he got on the list again and waited and waited. When it was time for the fateful call, he IM'd me from the car to tell me that he was going in for the surgery and how proud of himself he was that he didn't turn this one down.

As time went by, we started talking more on things like skype--online voice chat. Usually, we'd talk while watching a show, and usually anime, because of how passionate he was about that. Of course, being greg, we'd start 10 series and not finish any of them. He was so patient with the fact that I didn't really like anime, and just kept giving me new things to try until I DID find some that I liked. Now I have to go out and find Cowboy Bebop and Full Metal Alchemist to see how they end.

For sure, though, the thing we all enjoyed watching most together was the new Dr. Who series. he'd upload it to me and our friend linda and the 3 of us would watch it together for the first time. He'd always wait to watch with us and frequently stomp around in frustration because I had to work, or we couldn't find a time, or whatever. if several days went by, he'd still wait, but he sure didn't want to!

He was such a sweet guy, and so shy. I don't think the shyness came across until we started talking, and even more so when we met in person. I remember being on skype with both greg and linda and her 12 year old daughter, lulu, was there and I put my 5 year old, katie, on to talk with lulu...and greg. So katie, being the least shy person in the world, yakked to lulu for 5 minutes or so, before returning the headset to me. There was a bit of silence, broken eventually by greg saying "ok, that was the cutest. thing. ever."

I see his name everywhere still. My friends lists on Gizmo, skype, AOL IM, still sleeping in the MUDs, old emails--even my calendar program popups when it came up with an appointment and gave me the choice of "Dismiss" or "Snooze." They're all still there, but he isn't.

However, one of our mutual close friends online, Jenni and I decided that he would like the idea of us having him as our imaginary friend. He's still asleep in many of the MUDs he talked on, and everyone I spoke to intends to keep his character alive--in spirit--there for as long as the MUD is around. So, I'll always have Greg to talk to, in his way. The mudder way. And eventually, I know, he'll get around to answering. I'm willing to wait.

emily sparkle
keeper of Greg's blog

Like many folks, my first connection with Greg was digital. In 1996, I was on an email list for the local electronic dance community called “boston ravers”. Shortly after he introduced himself to the list, we arranged to meet in person at a Redlight party. I was bringing glowsticks, and he wanted some. I spotted him on the dance floor when I arrived, dancing like crazy in the mist of the fog machine wearing his Batz Maru backpack and laden with colorful bracelets and necklaces. When I introduced myself he hugged me warmly and brightly said “OH! I have a present for you!” After examining his arms in the dim flashing lights, he pulled a bracelet off and presented it to me. Among the glowy beads were ones that said E-M-I-L-Y. I was so touched that he had made this bracelet especially for me.

Greg had a very special ability to connect with people. He did this by sharing his passions for things like music, technology, anime, art, food, and movies with everyone he could through many channels. He loved to introduce friends with similar interests. He’d gather us for movie night or arrange a shopping trip through Harvard Square. We’d convene at the El Phoenix Room to stuff ourselves with 10 cent wings and cheap beer and talk and laugh. Sometimes there were more than 20 of us causing quite a ruckus.

He loved introducing people to new technology. He was my first-line technical support. Greg is single-handedly responsible for my digital addictions to mailing lists, instant messaging, macs, ipods, rss, css, wireless, strongbad, boingboing and countless interesting websites. He helped me set up my first blog and tempted me with the worlds of irc, mudds, Bluetooth, video games, gadgets, flicker, friendster, torrents… well you get the point. He probably did the same for you!

Together we’ve shared many lunches, pizzas, pans of brownies and countless sushi rolls. Greg LOVED sushi and would try anything once. We once got a little carried away and ate over $100 worth of sushi between the two of us. I can’t remember what we were celebrating, but we waddled out of his favorite sushi place in Harvard Square laughing at ourselves for being such sushipigs.

When his health became a concern, I was asked to accompany him to doctors appointments, to be there to take notes and hold his hand when they gave him the crushing news. “You have hard fibers in your lungs… and we don’t know why.” Later he asked me if I would be in charge of his blog when it came time for his lung transplant. It was very important to him that you all have the opportunity to know how he was doing. It has been my honor to perform this service for my dear friend Greg and his community.

As you know, Greg LOVED Anime. He collected DVDs, figurines, comics and anything else he could find with those brightly colored, big-eyed characters and was always introducing me to new series he would find online. To tell you the truth, I didn’t really GET most of it, but the art was fantastic and the stories were bizarre. They all sort of overlapped in my mind and he would laugh with me as I tried to figure out how a cute blue haired Japanese pixie turned into a panda bear when falling into water. He finally found one I could follow along to… after all, the Fruits Baskets series was about love and romance.

When I think of Greg, I hear music. I hear the oontz oontz oontz of dance music and cheeky lyrics and happy hollers from people on the dance floor. He really knew how to keep people dancing through the night. One of my favorite music memories of Greg is hearing him spin on one of the most beautiful beaches on Cape Cod. He had told me he had a fantastic set planned, and I will always remember the beauty in magical moment he created as sun peeked over the ocean-horizon. He had carefully selected the sunrise track and we joyfully kicked up the sand as we danced in a frenzy to the deep voice booming across the beach ”together as one, we dance with the sun, coming up through the sky, dancing together, dancing together, dancing together…”

---

and this is a lot for one entry, but we're putting a pretty face on the new SnoozeRadio, a 24x7 shoutcast of Snooze's mixes that Paul has created to memorialize Greg's mixes.

Posted by emily at 09:13 PM | Comments (8) | TrackBack

June 08, 2006

Memorial Information

Greg's family has set some times for the memorial. On Friday there will be an open house at the family home in Hartford from 5-8 p.m. On Saturday there will be a memorial service at 4:00 at the Hartford Seminary, which is only one block away from the home. Address, guest book, and other information can be found in Greg's obituary:

http://www.legacy.com/hartfordcourant/DeathNotices.asp?Page=Lifestory&PersonId=18028302

Posted by emily at 01:03 PM | Comments (0) | TrackBack

June 07, 2006

if you're coming to hartford this weekend...

if you're coming to hartford this weekend for the memorial and need a place to stay, please contact the family or let me know by email (fontaholic [at] gmail [dot] com) if you need a place to stay. the blakes and several of their friends have spare bedrooms and such for out-of-towners.

Posted by emily at 11:54 AM | Comments (0) | TrackBack

June 06, 2006

Let the Way be Open

greg, how do i put into words what i witnessed? we walked in and saw you so small, so deflated of life, so hooked up to technology. it was clear that the doctors and nurses had tried every damn thing they could. some machines were whirling, some were beeping, others bleated out numbers and blips and lines. bucky's certain if they'd had you on systems running on mac osx, you would have been better off.

a visual shock... those four giant hoses running blood from your leg to your neck... but your mom gave me a quick lesson in ECMO technology. she's become an expert... i was impressed. your breathing was odd, there were tubes and needles on every visible part of your body, and clearly beneath the johnnies too. it took me a little while to understand how everything was connected, working, happening.

your parents were so strong, greg. we stood with you and exchanged stories and moments and loving words of your life, your passion for music, anime and computers, your sense of humor and your penchant for the understatement. Eine stayed with you the whole time, and i thought that would suit you just fine... since Batz Maru was no where to be found. iTunes kept belting out your favorite tunes.

ironically, you were the largest, oldest patient at Children's Hospital, yet their attendance to you was as loving and caring as it would be for a small, scared child. when it was time, the nurses sweetly, gently explained as they removed tape and tubes and machines from your body. 'it's alright.' 'you're ok.' 'everyone is here for you, greg.'

and we were. we were there so intensely for you, that the rest of the room fell away. we stood, your mom, dad, bucky and i with our hands on you, saying prayers with the hospital minister, who was cheeky and helpful. a favorite chant of mine bubbled out... these moments are bittersweet and soft and beautiful. we waited, holding space for you while you took your last labored breaths.

bucky felt your energetic body cease transmitting. i poured as much loving energy into you as i could to help your passage be smooth. we all had eachother's backs. i felt your appreciation and i was honored to be there for you and your family.

we toasted your name with spicy scallop roll and sake at that place we always went in harvard square. before that meal, i had never been to that restaurant with anyone except you. you were an amazing, special friend and i am humbled by the strength you had in life.

Posted by emily at 11:01 PM | Comments (6) | TrackBack

Memorial Services

The family is working on the details for Greg's services this weekend. They invite you to gather at their home Friday afternoon and evening for an informal 'wake' and/or Saturday for services at a location to be determined. I will post more as I get it. The comments you're leaving are beautiful and reflect my feelings for Greg.

Posted by emily at 06:54 PM | Comments (3) | TrackBack

June 05, 2006

Safe passage, Gregory

Greg died today around 4:37 pm at Children's Hospital with his family and friends at his bedside. He was comfortable and surrounded by prayer, music and love. Memorial information to follow. I was honored to be there.

Posted by emily at 09:33 PM | Comments (69) | TrackBack

June 04, 2006

greg had a stable night

Eleanor called with a 'glass half full report'. Greg had a stable night last night. He's still on the ECMO and they're now increasing the length of time he's on dialysis.

tomorrow they're going to try again what they did on wednesday -- turn down the ECMO and see how his heart looks on the echocardiogram. hopefully it will go better this time.

Eleanor and Dale had the amazing opportunity to watch his doctors do a bronchoscopy on Greg. They verified that the sutures that connect his lung to his heart are still in good shape. They also saw no obvious infection. These are 'crumbs of hopefullness'.

The family is being mindful of the balance of doing things FOR Greg and doing things TO him. It sounds like they have a very supportive staff of Nurses at Children's, too. I am greatful for all they have done for Greg and his family.

I may have the opportunity to visit Children's hospital on Monday afternoon. I will be happy to take your comments to him -- read them to him, if I can. So please feel free to say as much as you need to Greg. If you'd prefer to email your thoughts for him privately, please do so at fontaholic *at* gmail *dot* com.

Posted by emily at 11:11 AM | Comments (10) | TrackBack

June 02, 2006

not much change

Greg's family met again today with the doctors. Although there hasn't been solid improvement, they have found a medication that is stablizing his heart rhythm, but he still having a problem maintaining a steady heart rate. The doctors are encouraged, and will keep adjusting things as long as they keep finding things that work.

Greg is very sick. He won't be able to stay on the ECMO much longer. His lungs are holding, but the doctors are very concerned about infection because his defenses are down from the immunosuppresives they're giving him. The next two days are critical.

Eleanor asked me to extend her thanks to those of you who have been calling and leaving supportive, loving messages for the family. They really appreciate it and know you all understand that now is a very difficult time for them and they often don't have the energy to take many calls, or make a lot of return phone calls, but they feel blessed to have the support of all of you.

Keep the prayers and healing energies flowing. love you greg.

Posted by emily at 06:13 PM | Comments (2) | TrackBack

May 31, 2006

no change...

Greg's mom called to say there's really been no change today. More as I get it.

For those of you wishing to send cards, please send them to his parent's house at 194 Kenyon Street, Hartford, CT, 06105. I'm guessing he's not allowed any non-family visitors at this point, but will ask the next time I speak to them.

Sorry I don't have more news.

Posted by emily at 08:49 PM | Comments (8) | TrackBack

May 30, 2006

same, but more hopeful

i touched base with eleanor today and they are remaining positive, while trying to stay realistic. greg has been having a rough time but has been holding his own and the family and doctors are happy about that.

the big challenge has been getting his heart into a good sustainable rhythm. they're using cardioversion techniques, including shocking his heart, to get his heart into a normal pattern. the ventricular specialist says that the right side of his heart has enlarged and is causing this to be not as succesful as they had hoped.

he's still on the ECMO to facilitate blood oxygenation, but they're working to reduce his use of it since prolonged use is not ideal. today they did an echocardiogram and reduced some of his meds successfully, but didin't keep the ECMO machine notched down for long since they want to make sure his heart can handle it. even with the ECMO, he's only able to use his lungs to about 30% of their capacity, so they need to get that up.

they are becoming concerned about neurlogical issues, but need to really assess greg when he's not as medicated. he can sometimes follow simple requests, but sometimes is not aware of reality.

he's been stable enough today that they've planned a trip back to CT to take care of some odds and ends and will continue to take shifts at the hospital.

greg's big goal is to get off the ECMO and get his lungs working at a higher capacity so that that they can concentrate on normalizing his heart rhythm without the cardioversion. focus your postive energy and prayers to this goal. the more positive energy people can send the better. do it how ever it works for you... light a candle, say a prayer, take some photos you have of greg and put them somewhere where you can smile at him every day/hour to send your love for him his way.

stay strong greg. you can do it.

Posted by emily at 06:19 PM | Comments (5) | TrackBack

sorry for the silence

Hi all,

Sorry for the silent weekend. I know that can be frustrating. We heard from Eleanor last night via phone message letting us know he is still stable and they're having a family meeting today to discuss next steps. I will keep you posted as soon as we are updated.

Greggles, many many healers and I sent you SO much energy this weekend while I was away. Stay open to the healing we're all sending you!

Posted by emily at 01:41 PM | Comments (0) | TrackBack

May 25, 2006

Holding pattern

just got another update from greg's family. he continues to remain stable. the doctors have reduced the sedatives enough that he opens his eyes when his name is called. hopefully they will be able to bring him back steadily and without incident. his family is staying at the hospital in shifts - returning home to get clean clothes and rest, then going back to the hospital to relieve the others. it is taking a lot of energy, but that comes from the love and support from all of us.

another note, i will be joining emily in the woods, so we won't be receiving the updates and posting them until monday night or tuesday. so it's extra important that those who love greg continue to send him healing energy during this time of transition back to the world of sunshine and life!

Posted by emily at 08:36 PM | Comments (2) | TrackBack

May 24, 2006

Another Day

a quick update: Rebecca called last night and left a message. yesterday was another relatively stable day. that's good - he needs at least one more of those before they will consider weening him from the ECMO. hour by hour he's getting closer to recovery. please keep the good love coming!

Posted by emily at 07:13 AM | Comments (1) | TrackBack

May 22, 2006

iPod online

today, greg's stability improved. he slept through most of the night and had a quiet day. well, his iPod has joined him via his family, so not *too* quiet. doctors and nurses from 2 hospitals met with the family to lay out the "plan". if greg remains stable for the next couple nights, they will begin to back him off the ECMO machine. this is the next step to getting his body to care entirely for itself. greg's family says that he is receiving excellent and thorough care. they also ask for continued support, love and healing energy to be sent to greg - it makes a difference. emily is away for the week, so bucky (her husband) is managing the blog for now.

Posted by emily at 11:02 PM | Comments (4) | TrackBack

May 21, 2006

Rebecca Called

Rebecca called tonight to let us know that Greg had a rought time last night and today, but is now stable. They switched Greg from the first ECMO machine to one that can be used for a longer period of time, but the changeover was difficult and they had to work on him through the night. There's not much they know right now, but they're hoping he can stay stable for 24 hours so that they can see if they can take him off the ECMO. They'll know more tomorrow. They're very tired so send out some energy for all of them. 24 hours isn't long, Greg. You can do this.

Posted by emily at 08:16 PM | Comments (2) | TrackBack

May 20, 2006

ECMO

Greg is literally on the cutting edge of technology as usual. He's been moved to Boston Children's Hospital ICU (where he is the oldest patient) to be hooked up to a state-of-the-art machine called an ECMO (Extra Corporeal Membrane Oxegenation) that oxegenates blood and cycles it through his system. He may be on this system for several days, but the longer he stays on it, more risks build up, so they're watching him very carefully.

In addition to the ECMO specialists at Children's he's got the constant care of excellent doctors and nurses including his pulmonary surgical team from the Brigham. It took 12 doctors and nurses to move him from one ICU to the other... good thing the buildings are connected. To be safe, they currently have him intebated, sedated and physically paralyzed with medication.

They're still not sure why his system is having such trouble, but at this point, they're treating everything they can in hopes to get him fixed up again. This could be a reaction to the blood transfusion, or rejection, or something else... they're just not certain.

Music can be an amazing healer, so Greg's dad went back home this morning to get Greg's iPod, so he can listen while his body is so deeply under. He's in tough shape, so please continue to send your prayers to him and also to his family who are doing as well as they can be in the circumstances.

Posted by emily at 01:01 PM | Comments (4) | TrackBack

May 19, 2006

update from eleanor

Hi all... Emily here again. I heard from Eleanor. The surgery went ok, but the recovery has been tough. His system is having trouble equalizing following the proceedure. Before he was intibated this afternoon, he asked that I update his blog to let you all know. Please send him love, light and prayers as his system adjusts. Hang in there Greg! You can do it! :) emily

Posted by emily at 01:07 PM | Comments (8) | TrackBack

April 12, 2006

'tis the season

I went out for lunch today and by the time I got home I was sneezing my head off and all stuffed up. Spring is here, and with it the beginning of allergy season. Wah-choo!

Posted by snooze at 04:31 PM | Comments (0) | TrackBack

October 12, 2005

Crappy Weather, Part 2

I was kind of dreading driving up to Boston in the rain, and now I'm not driving up. I just got a call from my local pulmonologist asking me to come in for and EKG today (so that I can start pulmonary rehab tomorrow). And lunch plans didn't workout so I won't be missing that either. Of course, now I can't get up there till Friday, which is kind of annoying.

Posted by snooze at 10:31 AM | Comments (0) | TrackBack

August 12, 2005

Insurance Annoyance #5

Augh.

I just got off the phone with my insurance company to find out that they'd sent me the wrong forms to get some of my meds covered. And had been giving me only semi-correct information for the last two months. So now I have to go around and find out what happened to the two claims I already sent in to the wrong place.

Next rant will be about Medicare.

Posted by snooze at 03:08 PM | Comments (0) | TrackBack

July 13, 2005

Boston, Doctors, and Good Food

I'm back in CT after two days of doctor appointments in Boston. They wanted to check out my heart, since my heart rate had been a bit irregular right after my surgery. The good news is that my heart is doing just fine.

Then last night we went to Evoo, one of my favorite restaurants. I'd wanted my mom to go for a while, as I thought she'd really like it. And she did. I had the Chinese Box, my favorite thing on the menu, and as always it was quite yummy.

Then today was my regular appointment at the transplant clinic. Everything looks to be doing okay. And the best news is they gave me the okay to drive. So I believe I'll be taking a short drive tomorrow :). So happy!

Posted by snooze at 06:33 PM | Comments (1) | TrackBack

June 22, 2005

Hospital - Day 3 - Escape!

Today at around 1:30pm I'll be escaping the hospital and heading home. This has been quite the uneventful stay, but that was pretty much to be expected. I also won't really know the results of my stay for a few weeks. The downside is that my Prednisone dose will go up for a few weeks. Hopefully I won't put on the same amount of weight as I had. I'm just shy of where I want to be.

Also, having the laptop has been a big lifesaver. I've made it through two DVDs and been able to interact with people on-line. Much nicer than just staring at the wall for hours and spacing out. Next time I'll have to let more people know that I'm going to be having a hospital stay so I can get more visitors (thanks for stopping by this moring Ece!).

And the nurse has just arrived for my last steroid dosage for my stay, which will take around an hour.

Posted by snooze at 12:08 PM | Comments (1) | TrackBack

June 21, 2005

Hospital - Day 2

So far things are uneventful. It's mostly just sitting around waiting for the next time to take meds. Luckily I have my Powerbook with me so that I'm online and finally caught up with lots of posts. I also brought some anime DVDs along so I can finally watch the last disk of Azumanga Daioh (YAMAMAYA!) and some other stuff.

Anyone feel like stopping by today/tonight and bringing me a snack? Leave a comment if so and I'll email you back if I see it in time.

Posted by snooze at 02:32 PM | Comments (0) | TrackBack

June 20, 2005

Back in the Hospital

As I said in my last post I'm back in the hospital for three days to get some nice high doses of steroids to combat some acute rejection. This is fairly run of the mill stuff, no need to panic or anything. I actually feel fine, the goal is to nip this in the bud before it gets serious.

Given that there's not a heck of a lot to do here I'll possibly be posting a bit more often than I have been.

Posted by snooze at 08:04 PM | Comments (1)

June 06, 2005

Hot Damn

Just now I made it up the stairs from the first to the second floor without using my cane. I never thought I'd be so excited by stairs. The lung is working great still, every bit of exercise makes me feel a bit stronger. My next goal is to be able to walk around the block by the end of the month.

Posted by snooze at 10:05 PM | Comments (2)

May 24, 2005

The Other Big Thank You

I wanted to have this thank you be on its own. I would like to thank Emily for keeping this blog updated. I'd asked her to do it for me years ago and was glad that she was able to do it. My friends and family have all be so impressed with it. And it really helped keep information flowing.

Thanks again Emily!

Posted by snooze at 04:24 PM | Comments (3)

The Thank You Post

There's so many people to thank for their support with my ordeal. At the very top of the list is my family. My parents, who were there for me every single day without fail, are the best. Even while I was a bit out of my head with ICU Psychosis. My sister, who came up from Louisiana and also watched over me. It was good to have her nearby.

Next are all the people who sent me cards and presents. I'm not even going to try and name everyone because there are just too many and I'm sure I'd forget. But at the top of the list would be Bree and Ellen.

And finally, a big thanks to all the nurses and doctors at Brigham & Womens. They were all so amazing. Even when I felt like I must be bothering them too much they were always there for me.

Posted by snooze at 01:24 PM | Comments (2)

March 10, 2005

Chickenpox Parties

Uh. I really have no response to this. I saw the story and had to go listen. It's just mindboggling.

'Chickenpox Parties' for Parents Wary of Inoculations
Oregon is experiencing a growing phenomenon of "chickenpox parties" -- events where parents wary of getting their kids inoculated against chickenpox knowingly expose them to infected children to build immunity. [via NPR News: Health & Science]

Posted by snooze at 07:36 AM | Comments (1)

Get Up And Exercise

McDonalds is starting a new ad compaign urging people to get some exercise.

McDonald's Says It's Time to Exercise

MCDONALD'S has a suggestion for Americans, who are becoming obese in alarming numbers: get some exercise. The company, under fire from those who say its food plays a role in the nation's obesity problem, introduced a marketing campaign yesterday promoting physical activity as part of a balanced life. The theme: "It's what I eat and what I do ... I'm lovin' it." The campaign includes commercials that largely dispense with traditions like showing the product, the restaurants or people eating food. One spot even tells viewers, "Maybe you should spend less time with your TV." [NYTimes]

Posted by snooze at 07:31 AM | Comments (1)

October 08, 2004

Pulmonary Fibrosis and Interferon

I hadn't heard about this article until just now so thought I'd share it. My doctor did not recommend that I try this treatment as he felt that the variety of IPF I had wouldn't be helped by it, but I know of a lot of people who were really happy with the results they had on it. So I am kind of surprised at this report. At least there seems to be hope that it will help people with mild to moderate symptoms.

Interferon a No-Go for Pulmonary Fibrosis

WEDNESDAY, Jan. 7 (HealthDayNews) -- A once hopeful treatment for pulmonary fibrosis, a fatal disease of the lungs, appears to have little or no effect on progression of the disease or on quality of life, a new study has found.

There remains some optimism, however, that the treatment, interferon gamma-1b, might benefit patients with mild to moderate symptoms of the disease. The authors of the study, which appears in the Jan. 8 issue of the New England Journal of Medicine, are launching a new trial to test this hypothesis.

The median survival time for patients diagnosed with pulmonary fibrosis is only two to three years. The disease results in a scarring of the lungs that eventually prevents the lungs from fulfilling their primary mission of delivering oxygen to the body. The only effective treatment is lung transplantation, although many people are treated with anti-inflammatory and immunosuppressive drugs, both of which have side effects... [www.medicinenet.com]

As for me, I'm just waiting for a lung to come up for me on the transplant list and wondering why this article just popped into my aggregator now if the article is from January.

Posted by snooze at 01:59 PM | Comments (0)

September 20, 2004

More Developments in the Study of Pulmonary Fibrosis

This one actually didn't seem too surprising to me, but it is cool that they were able to find the connection.

New Light Shed on Deadly Lung Disease

TUESDAY, Aug. 3 (HealthDayNews) -- New research holds out hope for people suffering from pulmonary fibrosis, a deadly lung disease, by discovering that cells that travel to the organ to repair damage end up doing more harm than good.

The study found these biological repairmen, which experts had thought originally resided in the lungs, were actually adult stem cells that migrated there from the patient's bone marrow -- and this migration can be halted.

...

"It's certainly very exciting research, but the information is obviously very preliminary," said Dr. Alfred Munzer, a lung specialist from Maryland and past president of the American Lung Association. "We have to see what meaning it holds."

Pulmonary fibrosis is a chronic and often fatal disorder that is characterized by extra scar tissue in the lungs. The disease, which affects some 80,000 individuals in the United States, has traditionally been treated with steroids and other immunosuppressive therapies, but with little effect. About 70 percent of people die within five years of diagnosis. "At the moment, there is no effective treatment for pulmonary disease, and it is not that uncommon a disease," Munzer said. [medicinenet.com]

What I think about this is that it gives me hope for people who get IPF in the future. I'm already well on my way to getting a new lung, but that honestly isn't my first choice. And it isn't something available to all people. In many ways I'm very lucky in that I haven't gotten worse in well over a year (*knocks on wood*).

Posted by snooze at 12:20 PM | Comments (1)

September 18, 2004

Medbloggers

Jon Udell has a great post on Medbloggers, something that I didn't really realize existed until he wrote about it. Though we've got political bloggers, library bloggers, law bloggers, so it makes sense there would be medical bloggers.

Medbloggers

...

The numbers are small. Starting with Pho's blogroll, I began assembling a list of the medical bloggers who cross-reference one another. What I found confirmed Pho's estimate that there are no more than 100 of these medbloggers, many of whom are aggregated at medlogs.com. Nor are these medblogs yet widely subscribed. Pho today has 14 Bloglines subscribers. One of the founders of the movement, medpundit, today has 58. Those numbers are one or two orders of magnitude shy of the readerships of many of the tech blogs I follow. But unless fear of malpractice strangles this baby in the cradle, that will be a temporary phenomenon. In the long run there will be many more people hungry for informed analysis of medical issues than for informed analysis of tech issues.

This looks like a great opportunity to watch the blogging meme replicate throughout another community of practice. I'll be fascinated to see how it changes, but also is changed by, that community. Corporate techbloggers, for example, are learning to walk a fine line between acceptable sharing of information and punishable transgression. Medbloggers face a different set of issues: libel, privacy, and of course malpractice. See this American Medical News article for a useful overview. [Jon Udell's Weblog]

As you can tell from some recent posts I've started following medical information on Pulmonary Fibrosis online, mostly inspired by this article. I even found a blog called Bronch Blog to subscribe to.

Posted by snooze at 04:54 PM | Comments (0)

The Need For Patient Education

One thing that amazes me is how much information is available on medical conditions and how few people ever find it. Hopefully things like this can help with that.

Coalition for Pulmonary Fibrosis Announces Publication of New Educational Tools for Patients

Preliminary Results From Latest Research Initiative Demonstrate Need for Lung Transplant and Pulmonary Rehabilitation Education for IPF Patients and Caregivers

SAN JOSE, Calif., Sept. 17 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today the publication of two new educational brochures: 'Lung Transplantation: What Every Patient with Idiopathic Pulmonary Fibrosis Should Know' and 'Oxygen Management and Pulmonary Rehabilitation for the IPF Patient'.

The two brochures were created for patients, family members and physicians alike based on preliminary results of the CPF's Basic Research Questionnaire, an education initiative launched last year to better understand the impact of idiopathic pulmonary fibrosis (IPF) on patients and families, and to help the foundation grasp the educational needs that arise for those fighting the disease.

To date, the CPF has received more than 1,400 responses to this ground-breaking survey, and based on educational gaps identified by patients, discovered the need for improved education and awareness on two very important topics for IPF patients; lung transplantation and pulmonary rehabilitation.

Interim results of the CPF's research questionnaire found that among current patients, 30 percent responded that their physician has not discussed, or even mentioned the topic of lung transplantation, a potential treatment option for IPF patients under 65. Of those patients under the age of 60, fewer than half (47 percent) said they have been advised to seek a lung transplant. Additional data from a Duke University study also indicates that more than 50 percent of those with IPF who are on transplant lists will pass away before a donor lung becomes available. [via Feedster Search: Pulmonary Fibrosis]

This also makes me very thankful that I found the doctors I did as I went through my diagnosis. I was quickly forwarded to a pulmonary specialist and he was able to give me a preliminary diagnosis almost immediately. Once it was confirmed that I did actually have Pulmonary Fibrosis we sat down and talked about what it all means, what treatments were available, how things tended to progress, what it meant long term, the whole thing. I still find it kind of stunning that other people have not had this same experience.

Posted by snooze at 04:44 PM | Comments (2)

Possible New Treatments for Pulmonary Fibrosis

I've started hunting for news items to do with Pulmonary Fibrosis in my news reader, so will be making note of interesting developments that I find.

Treatment for pulmonary fibrosis may be achieved by blocking cell death in the lung

A research team at Yale has found that blocking a kind of cell death called apoptosis in fibrotic diseases of the lung, also blocks the fibrosis, opening new ways of looking at treatment for lung diseases such as pulmonary fibrosis. [via Feedster Search: Pulmonary Fibrosis]

Posted by snooze at 04:35 PM | Comments (0)

September 16, 2004

Maggots!

Every time I hear about the use of maggots for healing I think "whoa, cool", then I think about it a bit more and go "ew icky!" Though, I guess if it works that well I'd cope with it if needed.

Maggot Band-Aid
David Pescovitz:
First used centuries ago to treat battlefield wounds, maggots are proving to be a useful treatment to prevent post-operative infections. Maggot debridement therapy (MDT) calls for maggot dressing to be applied to wounds twice a week for up to 72 hours each time. From the press release about a recent study on MDT in the journal Clinical Infectious Diseases:

"Debridement, or the removal of contaminated tissue to expose healthy tissue, can be done surgically. However, maggots that have been disinfected during the egg stage so that they don’t carry bacteria into the wound have their advantages. The larvae preferentially consume dead tissue (steering clear of live), they excrete an antibacterial agent, and they stimulate wound healing--all factors that could be linked to the lower occurrence of infection in maggot-treated wounds."

Link [via Boing Boing Blog]

Now I just need to find the article I remember reading about the medical uses of slugs.

Posted by snooze at 04:55 PM | Comments (3)

September 09, 2004

More People Gasping For Breath

Given my issues with my own lungs, I'm always keeping my ears out for news stories about them. The scary part is that I can see this leading to more people getting things like IPF earlier in life. Not something I'd wish on anyone.

Pollution's Long-Term Effects on Pre-Teens' Lungs

A study published in the New England Journal of Medicine this week indicates that current levels of air pollution have chronic adverse effects on lung development in children aged 10 to 18. The large study's authors conclude that the exposure leads to clinically significant deficits in adult lung function. NPR's Richard Harris reports. [via NPR News: Health & Science]

Posted by snooze at 07:27 AM | Comments (0)

August 10, 2004

Whoa, trails...

Oh my!

He saw comet-tails on every pitch.
The LSD No-Hitter:

When the subject of baseball and drugs comes up, the story of Pittsburgh Pirates pitcher Dock Ellis and his celebrated 'LSD No-Hitter' stands out above all others. On June 12, 1970, the 25-year-old pitcher was between starts, so he stayed back in his Los Angeles hotel while his team flew on to San Diego to play the Padres. Ellis invited his girlfriend over, and they dropped hits of acid around noon.

As he tells it in his autobiography, In the Country of Baseball:

'I had taken LSD ... I thought it was an off day. That's how come I had it in me. I took the LSD at 12 noon. At one, my girlfriend looked in the paper and said 'Dock, you're pitching today'.'"

[Off On A Tangent]

(Should I be admitting this here...?) Back in my partying days I certainly never took LSD, and while doing so never ever spun out at parties. And I definitely never learned to spin records while tripping. Because uh, drugs are bad. These days I stay away from that stuff, the last thing I need is to be high when I get the call for a new lung (talk about a recipe for a bad trip).

Posted by snooze at 01:15 PM