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 6:19 PM

April 14, 2006

Lung Celebration!

Today I celebrate getting my lung one year ago. Woohoo! It's been quite a voyage and continues to be an adventure every day. But things are going well and once I get this reflux stuff taken care of I hope it will be even better.

Tonight I have some friends coming by for a small gathering to celebrate. Should be a good mellow time.

Posted by snooze at 7:52 AM

April 5, 2006

More Medical Fun

Time for a bit of a health update. I'm coming up on my one year birthday on April 14th. Just to keep me from going too nuts celebrating, I'm going to be having stomach surgery sometime soon. The doctors think that I have continuing issues with acid reflux and are going to tie off my esophagus in my stomach. When they tie it off, it prevents the acid from coming back up. Though it doesn't keep food from going in (though at first I'll be limited to soft foods). While they are in there they will also open up the base of my stomach to help food flow a little bit better.

I'm actually not that nervous about it. Maybe having surgery as major as a transplant makes one a little jaded. I was more bothered by the other options. One was do nothing and hope for the best, no reason to tempt fate there. The other was one where I'd have a drainage tube from my stomach and a feeding tube into my intestines. With an added bonus of just not eating food.

No word on when exactly it will be, but I'm having a handful of tests next week in preparation for it. Including my favorite test, an endoscopy.

It will all be worth it though. The reflux is something that may have been the source of a bunch of health issues, including possibly my initial lung problems. I'll still probably never know for sure, but just having a possible cause is kinda nice. And I'd rather the reflux not cause issues with my new lung.

Posted by snooze at 5:27 PM

February 6, 2006


There are lots of fun side effects to getting an organ transplant. Most of these come from the various drugs you are on after the transplant. You get things that cut down your immune system, lots of steroids, etc. One of the more fun side effects is that you can lose bone density. I get treatments to help it, but I can only assume that this is at least part of the reason why I've had two teeth have hunks that have broken off in the last six months. I already feel fanatical about brushing, sheesh.

Today it happened while eating a tuna fish sandwhich, I wasn't even eating anything hard. Time for a trip to the dentist.

Posted by snooze at 7:37 PM

January 25, 2006


Organ Donation rules.

 ~Ksazar Pictures Txstarwars

May the force be with you.

Posted by snooze at 7:27 PM

January 20, 2006

Escape from the Hospital

Thursday morning, I went up to Brigham & Womens for a bronchoscopy. They like to do them on me now and then to make sure that everything is all fine with my new lung (one of my breathing tests was a little bit off last time I went into the office). For lung transplant recipients it a fairly regular occurance. In the past year I've had 4 or 5 (already losing count).

This time around my oxygen levels weren't so great after the bronch. It is one of the list of possible side effects of the procedure (along with fun things like them collapsing your lung). So, that combined with a wacky heartbeat (got up to 200 yesterday) earned me a stay in the hospital for a night. At first I thought the worst thing was having to do those three day hospital stays for a steroid pulse. I've now learned that the worst thing is not being prepared to suddenly have to stay in the hospital overnight. Crappy TV, only got CBS (which wasn't all bad, got to watch CSI), felt kinda grumpy, didn't sleep well, etc.

I'm home now, and the good news is: no signs of rejection. Of course that probably means some more strange tests to make sure nothing else is going wrong.

Posted by snooze at 8:46 PM

October 15, 2005

Speaking of Six Months

I just got a great T-shirt that I'd ordered from Cafepress today.

Tshirt saying I contain recycled parts

To see what other products are offered, click on the picture above. And remember, being an organ donor is a good thing. Visit the Donate Life webpage for more information.

Posted by snooze at 2:18 PM

October 14, 2005

Six Months

Six months down, hopefully many many many many more to go.

Posted by snooze at 1:46 PM

October 3, 2005

What Should I Do

Coming up soon is the six month anniversary of my lung transplant (Oct. 14th). I'm trying to figure out just what I should do for this. Maybe some kind of get-together that weekend or maybe something this weekend. I definitely want to do something. Leaves look like they've got another few weeks so I'm putting that on hold. Maybe a fall BBQ? A nocturnal party with some music? Anyone up for actually coming down?

I've been feeling really good lately. So I'm up for something fun.

Posted by snooze at 3:16 PM

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 6:33 PM

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

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 2:32 PM

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 8:04 PM

June 19, 2005

Lung Update

Last Tuesday I had a bronchoscopy, which is a fun procedure where they send a scope down into your lungs to make sure everything is okay. In my case there was a little bit of inflammation, which can be a sign of rejection. As a result they want me to come in for three days to get some high doses of anti-rejection medications via IV.

So on Monday I'll be going into the hospital till Wednesday. If I get my act together I'll set up a dial-up account before then so I can be online from the hospital this time.

Posted by snooze at 3:41 PM

June 10, 2005

Hot Damn, Pt. 2

I made it to the end of the street and back. The key thing to do I've discovered is wake up early an do it before the day warms up. Next up is to make it halfway around the block, which will mean I can hopefully go the rest of the way around the block to return :).

Posted by snooze at 12:58 PM

June 6, 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

May 29, 2005

More on the Lung

After my bout with acute rejection I woke up to find myself in the ICU again. This was a kind of weird time for me. The medications they gave me to fight off the rejection/possible infection scrambled my brain a little. Between that and being cooped up in the ICU I was more than a bit confused. For a while I pretty much forgot I'd had the transplant.

For the next week or so everything snapped back into place and I remembered where I was and what I was there for. But it was so strange to look back and and my thinking still makes sense. There is a condition called ICU Psychosis what is experienced by some people, and we think I had a touch of that added in. I remember having lots of really odd dreams, which I guess had me speaking out loud too. My parents and sister have all kinds of stories of me talking about too many countries and leprechauns.

After close to a week I was moved back to step down. At this point I'd barely eaten in weeks and my weight was down 35 pounds. So the next week was gaining strength, starting to walk again (with the help of a walker). Getting used to eating again (which took some time).

After just over a week of that I was ready to head home. I was going pretty crazy with boredom and got to leave just in time.

So far things at home are going well. I get better at going up and down stairs every day. It's amazing how hard even little things like that are still.

Posted by snooze at 5:08 PM

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 4:24 PM

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 1:24 PM

May 23, 2005

A Tale of a Lung

On April 13th at around 2pm-ish I got a call from Brigham and Women's asking me to come in for a transplant. After packing things up my parents and I zoomed up to the hospital. After getting there I learned things were a go and was prepped for surgery. At around 1am on the 14th they were done with my surgery.

Fast forward to the Sunday after that. That's the first day I remember being able to connect events together. Everything has gone well with the surgery and I am recovering nicely. Within two days I'm eating solid foods and being ready to moved to what they call Step Down. Step Down is where you go through the second stage of your recovery. They have you exercise every day to get your new lung working better and start to get you learning about what the rest of your recovery will be like.

Unfortunately, after a day or two in Step Down I had a setback and went into acute rejection. At the time they weren't sure if it was rejection or infection or what, so they were treating me for everything. This also meant going back under sedation as they put me back on the ventilator. I pretty much don't remember anything between then and waking up a week or so later in a fairly confused state.

I'll continue this tale in one of my next posts so that this doesn't get too long.

Posted by snooze at 11:16 AM

May 20, 2005

there's no place like home

spoke with greg earlier today. he's so happy to be home. he is hanging out on the second floor of his house, getting to sleep in a REAL BED, taking the stairs SLOWLY, and resting when he needs to.

he's been reunited with his powerbook and mentioned how tiring typing is... i think he'll ease his way back into it. being in the house will get him strong again though, so all this hard work will pay off -- even if it is exhausting for a while.

keep up the good work greg!

Posted by emily at 8:38 PM

May 19, 2005


just got word that greg has gotten the ok to go home today. they're giving him the last minute instructions and then he'll head home with his parents.

after hanging out with greg last night, this is such a relief! he was REALLY ready to go home yesterday and didn't want to think about having to stay in until monday.

he's walking with a cane and has managed to conquer 5 steps at a time, so he'll be able to get around his house.


Posted by emily at 10:09 AM

May 17, 2005

direct from gregory!

just got a call from greg! he recieved the playstation gear sent by ellen and jules and he's stunned and speechless. the thing 'just so cool!' thank you. thank you. thank you. says greg.

AND they are prepping him to go home! they've been meeting with him and his family to go over what to expect when he transitions from the hospital to home. he could be released this thursday or the following monday!!

on that note: if you're sending cards or letters, now's a good time to change your address book to his parents home:

194 Kenyon
Hartford, CT 06105

he's walking now with the aid of only a cane and even though stairs are still a little tough, he knows he will get stronger with time and they will get easier.

it was pointed out to me that the milky way comment from my last update was left dangling out in the wind... sorry about that, but greg's lost SO much weight (he's officially down to 129 lbs!) that they're feeding him high calorie yummies like milky ways to thicken him back up.

Posted by emily at 2:40 PM

May 15, 2005

visits, haircuts and milky ways!

saw greg tonight after dinner. he had a big day! renee visited him and gave him a lovely haircut. with the ruddiness back in his cheeks he looks very healthy and he's getting his strength back. chris visited as well as bree & mike! that's a lot of visiting!! he was admittedly a little tired but really enjoyed having all the visitors.

another cool accomplishment today... he walked around the halls with only the nurse's hand for support - no walker! one step closer to the hospital door! yay greg!

he specifically asked for everyone out there to send out the positive energy for his continued healing, he'd love to go home soon. cross your fingers & toes, or better yet, throw on your favorite gregory mixes and dance the energy up!

Posted by emily at 10:02 PM

May 14, 2005

doing great, walking a lot

greg is continuing to do well and is working hard getting his strength and appetite back up. the food is not causing issues any longer and he's doing laps with the nurses as well as physical therapy to regain his strength. they've given him his cellular phone, so you may hear from him! the computer could be coming back soon...

yay greg! keep up the amazing work!!

Posted by emily at 3:42 PM

May 12, 2005

lovely visit

hung out with greg for a little bit yesterday evening. he looks much rosier again and now has a firm grasp on reality. no more confusion! yay!

he was overwhelmed and excited by the gifts that i was finally able to bring to him from bree et al. i'm certain he'll be using the far side book for weight training!

he wanted to me to be sure to thank you guys for such thoughtful gifts and to send thanks to all his family and friends who have sent notes, cards, blog comments. they really mean a lot to him.

yay greg! go greg! :)

Posted by emily at 5:33 PM

May 11, 2005

a good couple of days

greg has had a good couple of days. his mom says he's seeming more and more himself and the confusion is starting to fade away. they've taken out the chest and nose tubes again and are starting him slowly again on "clear" foods. hopefully this time the transition back to food won't be so difficult.

they're working hard to get him stronger, walking laps with the nurses and doing his physical therapy.

when i talked to him on the phone yesterday, he sounded positively exhausted. there was a lot going on with doctors and nurses and treatments and such in his room. i've just spoken to him today and he sounds much brighter. i'm heading in to see him now!

Posted by emily at 3:40 PM

May 9, 2005

cautiously optimistic

the doctors are trying to figure out why greg is still uncomfortable and having a hard time with solid food. his lung looks good, so now they're testing his pancreas and gallbladder to see if they can figure out what is going on. they're being very cautious with him, but think he can get past whatever this is.

Posted by emily at 7:26 PM

May 6, 2005

back in step-down

sorry for the quiet. i'm back in boston and got to see greg yesterday AND today!

greg moved from the icu to the step down unit last night. he's back on solid food, but lost a lot of weight through this recent episode. the hospital is trying their best to load him up with calories (the nurse suggested a milkshake while i was there today) to get his weight (and strength) back up.

the anti-rejection meds are still making things a little confusing, but hopefully that will pass soon.

i know he'd love to receive more cards and/or letters! i'll print the comments you've all left recently for him this weekend.

Posted by emily at 8:25 PM

May 2, 2005

slow going

greg and his family opened a bunch of the cards that have come in over the last week or so today. his mom said that it was really wonderful for greg to get support from family, friends... so many people from all areas of his life. it was really lovely for all of them. he appreciated all of them and is thankful you're all thinking of him. keep the cards coming.

that said, greg's condition is about the same today. this part of the process could be very slow going, maybe a few weeks.

Posted by emily at 7:46 PM

May 1, 2005

more of the same...

greg is still making slow progress. not much has changed since yesterday and his family is with him all the time. keep them in your thoughts, as well as greg, of course.

Posted by emily at 9:08 PM

what a difference a week makes

I’m traveling for work, but am pleased to be bringing you updates from his mom from beautiful Reno NV.

Greg has continued to do well. Today he came off the ventilator. He’s extremely weak, somewhat scared and a little disoriented – as well as slightly giggly and high. The doctors are not rushing him to progress, as they’re still concerned about bringing him along too quickly. His sister has now joined his mom and dad at the hospital to be with him.

Keep the prayers/light/energy flowing folks!

Posted by emily at 12:13 AM

April 28, 2005

holding steady

greg's staying on course, but didn't make any great improvements today. the nurses say he's more comfortable though, which is good.

Posted by emily at 11:16 PM

April 27, 2005

must've been the dance-a-thon

greg has made some small positive steps. they are definitely working against rejection, but they think greg can beat it.

they're starting to remove some lines from him and are beginning to bring him out of the sedation. they're taking it slow though as he has gotten agitated as they've tried bringing him to the surface.

keep the positive energy flowing!

Posted by emily at 10:33 PM

April 26, 2005

teeny weeny baby steps

greg is still sedated in the ICU. it is likely they will keep him this way for about a week so he can heal comfortably and won't jeopardize the process by moving around. he's making minor progress each day. once he is brought out of sedation it's still likely he'll be in the ICU for a few more weeks.

i think everyone should put on their favorite greg mixes tonight and dance around your living rooms (offices, bedrooms, whatever) picturing greg grinning and spinning for you.

Posted by emily at 6:03 PM

April 25, 2005

no news yet

there has been little change, but the doctors are with him all the time trying to figure out what's going on. they currently have him heavily sedated in the ICU.

keep greg in your prayers. he need all possible positive energy focused his way.

Posted by emily at 2:43 PM

April 24, 2005

back online

sorry about the outage. not sure what happened. we speculated that the power went out at greg's house in CT, so the house elves must have rebooted greg's server.

the doctors are still watching greg carefully for signs of infection and/or rejection. he's back in the ICU.

i'll let you know more as soon as i can.

Posted by emily at 9:37 PM

April 23, 2005

keep the energry up

greg had a bit of a setback last night and the doctors are watching him for signs of infection and/or rejection. i don't have more info now, but i will keep you posted as i hear more from his mom.

keep up your prayers for greg.

Posted by emily at 11:47 AM

April 22, 2005

working hard at healing

hi all,

greg continues to do very well. they did a scope on his lung today to see how everything was working. we don't know the results yet, but greg was exhausted afterwards, so i'm not going to see him tonight.

his mom trekked back to connecticut today to get his computer and some comfy clothes. he's plugged in, but not wired to the net yet... at least he has his music now.

he's completely off intravenous pain meds and the epidural spout has been removed. it's all oral pain meds from here.

his mom says they're working him really hard to boost his strength and hopefully get him home soon. healing is hard work, so continue sending your love/light/prayers to gregory!

i'll see him tomorrow and post more for you.

:) emily

Posted by emily at 5:53 PM

April 20, 2005

nice new digs...

greg has moved to the step down unit. in fact, he *walked* from the ICU to his new room! it is private, has a nice window view and is actually quite spacious. it even has a private restroom. fancy. :)

i was allowed to accompany greg and his nurse on his after dinner walk. one lap around the unit - 1/24 of a mile - and he did great. we even joked with another patient that greg could easily take him in a race. it would have been quite a sight! they were both piloting to these great walking carts with arm pads and suction tanks and hooks for all the crazy lines and bags and stuff. there are vertical handles with bike grips on them to help steer. greg naturally placed his thumbs on the tops of the posts as though on shooter buttons on a joystick.

solid food is old news now... when i arrived greg had just finished up a steak tips dinner. he'd had eggs and pancakes for breakfast, grill cheez and tuna salad for lunch. he says the food is not too bad. kinda like airplane food, luck of the draw.

yesterday i couldn't get over his complexion, today it was his voice. suddenly his voice seems to be booming! go new lungs! project! project!

greg mentioned that he's been having vivid dreams and flashes since the surgery. he's been inspired to create images of them... on the computer, of course... soon!

they're doing medication alchemy, taking him off the epidural pain meds and putting him onto oxy. they're starting him on prednisolone (is that really how you spell it? should we tell the spammers there's no Z in it?) tomorrow. they've already introduced an anti-rejection med (or maybe two).

i met one of the transplant doctors and a fellow, both young and very nice! the fellow said she was reading along... *waves* the doctor was guardedly enthusiastic about greg's progress. he said there *will* be ups and downs. {his mom told me the other transplant recipient had a set back last night. "it's all so tenuous." she said.}

glad you're all enjoying reading along. don't thank me for writing this, thank GREG for being certain you all stayed up-to-date by asking me to do this (six years ago!)

Posted by emily at 9:13 PM

April 19, 2005

one more note

today it looked like a grey shell had peeled away from greg. he looks fresh and new, somehow.

Posted by emily at 10:27 PM

greg looks GREAT!

i didn't mention my potential visit to greg before i went, just to be safe, and to not jinx it. but i was very lucky tonight and got to visit greg in the ICU!

greg looks GREAT! his face has a rosy, healthy glow and he was talkative and all smiles. i visited for about 25-30 minutes (the sign says stay only 10) while greg had dinner... mac and cheese... the first 'solid' (but actually classified as 'soft') food he's had since going in.

he's connected to only a few visible tubes and lines, but he's got this great high tech console looming behind him that bleeps and blips and sighs at regular enough intervals that greg seemed unphased by the sounds.

he looked so much like himself that it took me a few minutes to realize... he had no oxygen tube in his nose! he grinned when i noticed and said he'd been on "room air" all day. that is so freakin' cool.

he says he has no memory of wednesday through sunday (makes sense) and the first thing he remembers after the surgery is one of the nurses talking to him. he has some memory of the lines going in and the anesthesiologist (who he said was very nice), but nothing else from the operation.

he's hoping to move to the step-down unit tomorrow, but there may not be a bed available for him, so cross your fingers. i'm not sure if he will be allowed visitors in that unit or not, but i'll let you know. he says he's ready for visitors. :-D

he's already been scheming how to get himself back online. the hospital does not have wifi and he may have to resort to dial-up when the time comes. the horror!

i printed out all of your comments for greg to enjoy and saw that he had already received a few cards at the hospital. i also took an anime catalog for him to flip through.

i may be able to go see him tomorrow night, too. yippee!

Posted by emily at 7:49 PM

moving right along...

greg is walking today. when his parents visited, he made a loop around the ICU for the second time. of course, he's tiring quickly so the nurses aren't pushing him too hard!

he's been allowed juice and jello to introduce food back to his system.

for those of you asking, he's not yet allowed visitors who are not his family. i will keep you posted though.

:) emily

Posted by emily at 4:45 PM

April 18, 2005

vertical -- for a minute...

hi everybody, here's the latest on greg from his mom... it's all really good news!

they continue to remove tubes and lines from him and have cut down on the number of times a day they're doing bloodwork, etc. he's not using a lot of oxygen and is breathing pretty much on his own.

the big news of the day is that greg stood up today with the assistance of cool hospital technology! the bed he's in becomes chair-shaped. once they got him into this position, they lowered the bed so his feet touched the floor. then, all he had to do was stand up against another support machine and he was able to lift his legs up and down and stand for about a minute. then, he sat back down... and conked out! :)

they're hoping to start him on physical therapy tomorrow and may move him to the 'step-down' unit (not ICU but not general hospital rooms) by wednesday. great progress!

greg's got his glasses back on and is much less overwhelmed than he was yesterday.

he is allowed receive cards in the mail. following is the address:

gregory blake
c/o brigham & women's hospital
75 francis st
boston, ma 02115

:) emily

Posted by emily at 4:14 PM

April 17, 2005

bye-bye ventilator

greg was fully awake by morning and was able to follow directions so the doctors did one more scope into the breathing tube with a camera. it looked fine, so they removed greg's ventilator. greg is now breathing on his own!!

he had to wear an oxygen mask for a few hours, but now they only have him on the nose-tube thing.

when they saw greg through the window of his room, he waved to them from his bed. he is much more alert and understands why he has to hold still. they're moving tubes, changing meds and monitoring his blood pressure, which has been a little high.

despite having a very sore throat from the ventilator, greg was able to say a few syllables this afternoon. he has a 'healthy' cough. he's no longer restrained.

he hasn't yet had additional hydration or nourishment since the organs are not yet ready for food (after all the anesthesia) and could make him sick. they do not want to risk getting liquid into his lungs.

his mom says he *could* be standing up tomorrow. c'mon greg!

:) emily

Posted by emily at 8:37 PM

April 16, 2005

April 14, 1:00am, 2005! huzzah!

greg's new (re)birth day is April 14, 1:00am, 2005! huzzah! that's the official word from his mom... the surgeons who noted this as the time said it when the clamps were removed from the new lung in greg's body. very cool.

today, greg is still on the ventilator. the doctors *were* hoping to remove it today AND are hoping to remove it tomorrow. greg is breathing more and more on his own. he's starting to come out of the sedation. they need to wait until he's a little further 'to the surface' before they remove it so that he doesn't thrash about in disorientation and do any damage. they want to be sure greg comes out in a safe manner.

his mom also commented that they feel very lucky for the fantastic nursing care greg is receiving. they keep it light, they take time to explain and work very well with greg. the nurses are wonderful with him.

send your vibes/prayers/light/energy to greg as he comes back to the real world and also to his family for strengh and patience.

Posted by emily at 9:33 PM

April 15, 2005

new lung WORKING!

just heard from greg's mom. the doctor says that greg is stable, and the new lung is working! they are not going to remove him from the ventilator today, they want to wait until tomorrow to be sure it's safe to do so.

they have cut back on some of the blood pressure medication and such, but will keep him heavily sedated (and totally "out of it") until they remove the ventilator. then they can start bringing him back into consciousness.

his parents have been able to spend time with him in the ICU, holding his hand and talking to him.

more to come... keep the good vibes rolling for gregory!

:) emily

Posted by emily at 3:52 PM

April 14, 2005

still sedated, but stable

via voicemail tonight...

greg's parents spent the day at the hospital today, seeing greg a few times. he is *very* heavily sedated. not even conscious, but the nurses indicated they thought he knew his parents were there. he even opened his eyes once. if all goes well tonight, they will remove him from the ventilator tomorrow. he is stable. everything is going well.

yay! more tomorrow after she and i actually get to speak to eachother on the telephone.

:) emily

Posted by emily at 10:57 PM

in intensive care!

greg has a new lung! hiphip! hooray!!

his mom called and said they have taken him to intensive care and will keep him pretty heavily sedated for the next 24-48 hours since the lung was outside the donor for a while and they want to reduce any risk from swelling.

she said she and his dad were allowed to peek at him as they wheeled him into the ICU room and he still looks like greg! :)

the donor's other lung was given to another patient at the hospital... a very interesting new connection for greg to another person.

fantastic news, really! i will post more on his progress as i hear it. yay for greg!!

Posted by emily at 5:03 AM

April 13, 2005

just spoke with greg's mom

greg's mom just called to let me know that greg is currently in the operating room, getting ready to receive one lung from the donor. greg was still in the emergency room finishing up the tests when the OR called to say "come now." the operation should take 6-7 hours.

she said greg was in good spirits and ready! everyone please send your prayers/light/positive energy to greg for a successful transplant and a speedy recovery.

i will post as soon as i hear any update.

:) emily

Posted by emily at 6:42 PM

Thank God for Bluetooth

I'm in the car right now. Dad's driving and we're speeding up 84 to Boston, and I'm bored. At this point I'm just ready for this to all be over and done with. So I figured I'd see if I could get my computer set up to use my cell phone for connectivity and it's working just dandy. Pretty damn slick.

So the next step in all of this lung stuff is to get to the ER at Brigham & Women's Hospital (where I'll be having the surgery and recovering). Once there they'll take some blood, stick an IV in me and we wait for the lung to be ready. Beyond that we'll see. My guess is I'll be fully offline for at least the first few days. Though I'm sure they'll have me up and shuffling along at least a little even by tomorrow.

As far as visitors I don't think I get to have any right at first. My immune system will be fairly suppressed at first and they want to eliminate any chance of infection. Check back here for more details.

I still can't believe it has only been a week since I was last called. And they called during the day! That was the last thing I expected!

Posted by snooze at 3:14 PM

What is it about Wednesdays

Hopefully this one won't be a false alarm. I just got a call to go to the emergency room for a lung. I'll try and do an update from the road. Wish me luck!

Posted by snooze at 1:48 PM

April 7, 2005

On Breathing

I've been meaning to do a lung update for ages. Since everyone keeps asking how things are going. For those of you just joining us, I have something called Idiopathic Pulmonary Fibrosis (IPF). The Pulmonary Fibrosis Foundation has a pretty decent web site on it if you want more details. But in general it means this:

Pulmonary Fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker causing an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream.

I'm not sure how I got it or even when exactly I started feeling the effects of it. In hindsight it was quite a bit before I saw a doctor about it. To put it bluntly, it sucks. I'm the kind of person who used to walk everywhere, go out dancing till the wee hours of the morning, and just be active all the time. These days I take things much more slowly.

I've tried various treatments and none of them seem to have done much, except maybe stabilize my condition. I haven't gotten any better or worse in a few years. So, the current step is waiting for a new lung. So, not much has changed. I'm definitely towards the 'top of the list', but that is all due to change when some new regulations go into effect that will make them order the list by 'need' in another month. Bah.

So I'm now opening this up for any questions you may have about it all. Ask away, I'll do my best to answer.

Posted by snooze at 9:05 AM

April 6, 2005

It Always Comes In The Middle of the Night (pt. 2)

Well, the one thing they were waiting to hear back on came back with a result that made the lung not a good one. So no late night trips for Gregory tonight. Of course after that I'm not going to be able to sleep at all the rest of the night. I'm already feeling myself start to come down off that little adrenalin rush I got.

I've been meaning to post a bit about how things have been going with this for a while, but just haven't had a chance. I guess I should do that later today.

Posted by snooze at 2:51 AM

It Always Comes In The Middle Of The Night

Well, it's around 2:20 am and my phone just rang. It was the doctor at the transplant clinic and she was calling to say that they had a potential lung for me. They had one thing they were waiting to hear on, but if that was okay it was a go. They wanted me to start getting ready to come up to the hospital.

So I'm freaking out just a tiny bit now. Even if I go up tonight it still isn't 100%, but it's pretty damn close. I'm not sure how long this means I'll be offline for. I would like to have access again fairly soon, but that isn't anything definite. I'm surprisingly calm about the whole thing right now. Though we'll see how things as I get closer to the hospital.

I'll try and post again as I hear more (I'm going to try and do one from the road). Otherwise it may be a week or so before you hear anything. Wish me luck!

Posted by snooze at 2:36 AM