Recently in Lung Transplant Category

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.

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.

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.

Organ Donation rules.

May the force be with you.

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.

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

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.

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

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.

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!

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.

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.

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.

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.

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 :).

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.

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.

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!

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.

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.

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!

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!

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.

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.

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!